research in health and social care

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• Published: 06 May 2021

Co-producing knowledge in health and social care research: reflections on the challenges and ways to enable more equal relationships

• Michelle Farr   ORCID: orcid.org/0000-0001-8773-846X 1 , 2 ,
• Philippa Davies   ORCID: orcid.org/0000-0002-2678-7126 1 , 2 ,
• Heidi Andrews 1 , 2 ,
• Darren Bagnall 1 , 2 ,
• Emer Brangan   ORCID: orcid.org/0000-0002-1288-0960 1 , 2 , 3 &
• Rosemary Davies   ORCID: orcid.org/0000-0001-9969-1902 1 , 4  

Humanities and Social Sciences Communications volume  8 , Article number:  105 ( 2021 ) Cite this article

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Researchers are increasingly encouraged to co-produce research, involving members of the public, service users, policy makers and practitioners in more equal relationships throughout a research project. The sharing of power is often highlighted as a key principle when co-producing research. However, health and social care research, as with many other academic disciplines, is carried out within embedded hierarchies and structural inequalities in universities, public service institutions, and research funding systems—as well as in society more broadly. This poses significant challenges to ambitions for co-production. This article explores the difficulties that are faced when trying to put ideal co-production principles into practice. A reflective account is provided of an interdisciplinary project that aimed to better understand how to reduce power differentials within co-produced research. The project facilitated five workshops, involving researchers from different disciplines, health, social care and community development staff and public contributors, who all had experience in co-production within research. In the workshops, people discussed how they had attempted to enable more equal relationships and shared ideas that supported more effective and equitable co-produced research. Shared interdisciplinary learning helped the project team to iteratively develop a training course, a map of resources and reflective questions to support co-produced research. The gap between co-production principles and practice is challenging. The article examines the constraints that exist when trying to share power, informed by multidisciplinary theories of power. To bring co-production principles into practice, changes are needed within research practices, cultures and structures; in understandings of what knowledge is and how different forms of knowledge are valued. The article outlines challenges and tensions when co-producing research and describes potential ideas and resources that may help to put co-production principles into practice. We highlight that trying to maintain all principles of co-production within the real-world of structural inequalities and uneven distribution of resources is a constant challenge, often remaining for now in the realm of aspiration.

Introduction

Co-production of research—where researchers, practitioners and members of the public collaborate to develop research together—is promoted as a way to strengthen public involvement, and create and implement more relevant and applicable knowledge, that is used in practice (Staniszewska et al., 2018 ; Hickey et al., 2018 ). Academic disciplines and funding bodies define the concept of co-production differently, using divergent methods and theories (Facer and Enright, 2016 ), with subsequent debate about what co-production is and who may be doing it ‘properly’. We use the INVOLVE definition and principles of co-producing research (Box  1 ) (Hickey et al., 2018 ), which includes the often-agreed principle to share power more equally between partners. However, the extent to which this is achievable within structural inequalities and institutional hierarchies is debatable (Flinders et al., 2016 ).

This commentary article reflects on a project that aimed to:

share interdisciplinary learning about co-produced research

understand how to enable more equal relationships with co-production partners, particularly public contributors—defined as members of the public including patients, potential patients, carers and people who use health and social care services (in contrast to people who have a professional role in health and social care services or research) (NIHR CED, 2020 ).

develop training and resources to support co-produced research.

The project was developed by a team of three applied health researchers, a public involvement lead and three public contributors (with in-depth experiences of co-produced research) undertaken within the National Institute for Health Research (NIHR) Applied Research Collaboration (ARC) West, an organisation that develops applied health and social care research. Through facilitating five project workshops, we engaged with eleven researchers from five disciplines; six practitioners; and eleven public contributors with involvement and co-produced research experiences. We shared practical lessons across disciplinary boundaries about how to do co-produced research more equitably (Oliver and Boaz, 2019 ). These workshops helped the project team progressively and iteratively develop a training course, a map of resources (Farr et al., 2020 ) and reflective questions (Davies et al., 2020 ), freely available to support co-produced research.

This article explores the extent to which these multidisciplinary lessons can help us transform knowledge production in more equitable ways, outlining our learning from this project. First, we overview some conceptual issues with the use of the word ‘co-production’. We then discuss key matters raised in our interdisciplinary workshops: ‘Who is involved and when in co-produced research?’; ‘Power dynamics within health and social care research’; and ‘Communication and relationships’. We conclude by highlighting that bringing co-production principles into the real research world is fraught with difficult and messy compromises. Researchers (often lower in the academic hierarchy) may be caught up in battling systems and policies to enable co-production to happen, especially where they attempt to address issues of power and control within the research process.

Box 1: INVOLVE a Definitions and principles of co-produced research (Hickey et al., 2018 )

‘ Co-producing a research project is an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge ’ (p. 4).

Principles include:

Sharing power where research is owned by everyone and people are working together in more equal relationships

Including all perspectives and skills to ensure that everyone who wants to make a contribution can do so, with diversity, inclusiveness and accessibility being key

Respecting and valuing the knowledge of everyone , with everyone being of equal importance, and benefitting from the collaboration

Reciprocity and mutuality , building and maintaining relationships and sharing learning

Understanding each other with clarity over people’s roles and responsibilities.

a INVOLVE supported active public involvement in NHS, public health and social care research, with a new NIHR Centre for Engagement and Dissemination (CED) launched in April 2020.

The concept of co-production

The NVOLVE co-production principles (Box  1 ) (Hickey et al., 2018 ) build on public policy co-production literature (Boyle and Harris, 2009 ; Staniszewska et al., 2018 ), which explores how service users can take an active role within the provision of public services (Brudney and England, 1983 ; Ostrom, 1996 ). A key premise is that service users have a fundamental role in producing services and outcomes that are important to them (Brandsen and Honingh, 2016 ). While in our project we particularly wanted to focus on ways of sharing power with service users and public contributors, defining who is involved in co-produced research varies across disciplines. The active involvement of service users/members of the public has sometimes been lost in research that is labelled as co-produced. UK funding councils such as the Economic and Social Research Council (ESRC) talk of co-produced research as developed between academic and non-academic organisations or communities (Campbell and Vanderhoven, 2016 ; ESRC, 2019 ). In health services research, authors have used the non-specific language of ‘stakeholders’ (Oliver et al., 2019 ). Sometimes the main research co-production partner has been practitioners (Heaton et al., 2016 ) and service users have been relegated to ‘context’ (Marshall et al., 2018 ), rather than being active agents and partners. This obfuscation of the role of service users/ members of the public in co-production is detrimental to the drive for inclusivity, democratisation and equity within co-produced research, which addresses the needs of service users/ marginalised citizens (Williams et al., 2020 ), overlooking the long political history of demands from service users to be more democratically involved in health and social care services and research (Beresford, 2019 ).

In our project, we particularly wanted to focus on how to equalise relationships with service users and public contributors (defined above) within co-produced research. The egalitarian and democratic principles of co-production means that service users, who may have been marginalised and are on the receiving end of professional ‘expertise’, now become equal partners in research (Williams et al., 2020 ). Best practice in co-produced research remains contested, with a significant theory-practice gap (Lambert and Carr, 2018 ). We wanted to understand what practices and resources could help bring principles into practice, when we are working within a context of structural inequalities.

Who is involved and when in co-produced research?

INVOLVE states that co-production should ‘occur from the start to the end of the project’ (Hickey et al., 2018 ) (p. 4). The principle to ‘include all perspectives and skills—make sure the research team includes all those who can make a contribution’ (Hickey et al., 2018 ) (p. 4) can be highly aspirational.

In our interdisciplinary workshops we discussed how there is often a lack of funding to pay public contributors to help develop a funding application. Formative ideas about research priorities and design can often be made by researchers before other people are involved. Our workshop discussions noted that involving all stakeholders who potentially have an interest in a project could be a very large and diverse group. It would be difficult to involve everyone, and this could be in tension with the idea that smaller groups can work better together. There are usually practical constraints on team numbers, budgets to pay for public contributors’ time and project scale and size. A tension can exist between the number of people you can viably include, and the diversity of the group you are working with. More generally, workshop participants highlighted problematic issues of claims to representation, where people within a co-production group need to be aware that they don’t speak for everyone—not even everyone in a group they are there to ‘represent’—and there was a need to look for opportunities to draw other perspectives in.

Workshop discussions included that when public contributors join a project there is a need to support people to take on different roles, and for people to also have choice and work from their strengths, rather than assuming that everyone has to do everything. Some group members may feel they lack skills or expertise in particular areas, and so may need training, support and mentoring. There may also be assumptions about who is going to do what work, which may need to be explicitly discussed and agreed. Ensuring proper payment of public contributors is an essential element of co-production. If public contributors are going to collect research data, they need appropriate payment, contracts and to follow all research governance processes. Within UK National Health Service (NHS) research that may mean having Research Passports, Good Clinical Practice training and Disclosure and Barring Service checks, if they are working with vulnerable people or children. Not all these processes are designed for public contributors, they can be potentially problematic to navigate, and researchers may need to support public contributors through this process. Table  1 summarises some of the challenges around who is involved, and when in co-produced research, and potential practices and resources that may help.

Power dynamics within health and social care research

Theoretical perspectives on power.

Critical and interdisciplinary perspectives on power can help us understand how to facilitate more equitable partnerships within research and co-produced work (Farr, 2018 ; Oliver and Boaz, 2019 ). The first principle of co-production is to share power through ‘an equal and reciprocal relationship’ between professionals and people using services (Boyle and Harris, 2009 ) (p. 11). However, several authors highlight how co-production can be a rhetorical device to hide power and social inequities (Flinders et al., 2016 ; Thomas-Hughes, 2018 ). Using Lukes ( 2005 ) dimensions of power, Gaventa ( 2007 ) conceives that power can be visible (institutions, structures, resources, rules), hidden (agenda-setting, some voices more dominant within decision-making), or invisible (embedded in beliefs and language).

Focussing first on visible aspects, structural and resource issues can impinge on people’s ability to co-produce, for example funders’ top-down control of research priorities and funding streams, alongside NHS and government political priorities. University research environments can be competitive, ‘unkind and aggressive’, which can crowd out ‘collegiality and collaboration’ (WellcomeTrust, 2020 ), exactly the kind of principles that academics are being encouraged to adopt through co-production. Traditional research frameworks are ill-fitted to the challenges of transforming power and control that are needed for co-productive practice (Lambert and Carr, 2018 ). Power hierarchies are intrinsic to research processes, with people experiencing competing expectations (from public contributors and communities, co-researchers, colleagues and institutions) when working in this way (Lenette et al., 2019 ). How do researchers create co-production circles of equality, reciprocity and share power with public contributors, when often researchers themselves are on temporary contracts and subject to the pressures of publishing, funding, impact and self-promotion within ‘toxic’ (Wellcome Trust, 2020 ) competitive structures? Understanding who is involved and how in decision-making processes (hidden aspects of power) is essential to understand how power is exercised. However, political scientists have long ago illustrated that ‘even the most internally democratic small collectives cannot in fact achieve equality of power in their decisions’ (Mansbridge, 1996 , p. 54).

Scrutinising invisible aspects of power, power can be seen to operate through knowledge, social relations and the language we use (Foucault, 1977 ). The principle of respecting and valuing the knowledge of all (Hickey et al., 2018 ) can be challenging in a healthcare context where a knowledge hierarchy with traditional positivist epistemological assumptions values an ‘unbiased, objective’ position. Co-productive approaches can be grounded in critical theory (Bell and Pahl, 2018 ; Facer and Enright, 2016 ), as opposed to traditional scientific paradigms. The experiential contextualised and tacit knowledge of people who use services, and related qualitative and participatory action methods, can be valued less than knowledge derived from randomised controlled trials (RCTs). This increases the challenge of co-production, as the values and methods of health and social care research may align less with co-production principles. Indeed the very idea that co-production and the sharing of power can actually happen within mainstream University spaces has been contested, with Rose and Kalathil ( 2019 ) arguing that Eurocentric hierarchical institutions that privilege rationality and reason will never be coming from a place where different knowledges are valued equally.

Understanding power in practice

In our project it was difficult to maintain a focus on power relations in the face of a strong tendency to emphasise practicalities, highlighting the difficulties of bringing these issues into clearer focus. An analysis of power dynamics may be an important aspect of a sociological study, but not one considered of such importance within health and social care research.

Focussing first on visible, structural aspects of power, workshop participants discussed their experience that within research that is formally ‘owned’ by a University (i.e., the Principal Investigator (PI) legally responsible for the project is situated within a University) there are associated issues of accountability and formal responsibility for delivering a funded research project. This creates constraints where projects have to deliver what is described rather than what emerges from the co-production process. How a PI works to develop a collaborative leadership style is an under-researched area. Within our own project we all held some unspoken assumptions about leadership and ensuring progress toward our project objectives. Workshop participants highlighted that organisational systems may not support co-production (e.g., finance, human resources and funding systems) so researchers may have to be tenacious to advocate for system changes in order to achieve things, which can be frustrating and time-consuming. For these myriad reasons, realistic resourcing of researcher time for co-production is needed, and many researchers may still end up putting discretionary time into projects to make co-production a success. There are few tools to help researchers avoid or alleviate risks to themselves and their stakeholders, such risks including practical costs, personal and professional costs to researchers, and costs to stakeholders (Oliver et al., 2019 ).

In relation to decision-making, workshop participants noted that in a pragmatic sense, doing everything by committee and consensus can impede project progress, as no decisions can be made until everyone is present at meetings. Even if decisions are made with everyone present, the power dynamics between people does not necessarily ensure that decisions are shared and agreed by everyone. Within our own project, where we were trying to stick to the principles of co-production, we found that we often had discussions between paid staff members outside of team meetings where thinking was developed and decisions taken. If public contributors are without employment contracts and are not working alongside other staff, there is potential for them to be excluded from informal discussions and decisions in day-to-day tasks. In our workshops there were discussions about whether researchers needed to ‘get out of the way’ and ‘sit on their hands’ in order to make space for others. We discussed how to practically create space for diverse knowledge and skills to be shared and considered whether it is possible to identify shared interests or if there is always a political struggle for power.

Through our project, we reflected as a team how assumptions and practices of how we do healthcare research may be deeply embedded within academic cultures. This links with Foucault’s perspectives on power dynamics (Foucault, 1977 ), every act and assumption we make is imbued with power, which makes power particularly hard to observe, grasp, critique, challenge and transform. We all have subconscious beliefs and work within cultural assumptions, thus continual critical reflective practice, and constant attention to fluctuating power relations is needed (Farr, 2018 ; Bell and Pahl, 2018 ). In workshops, suggested ways to address cultural issues included harnessing the current trends for co-production and using this to start challenging engrained cultures and accepted ways of doing things. Current funder prioritisation of co-production can enable senior researcher support for co-production, as organisational leaders recognise the cultural capital of the word and practices of ‘co-production’. Raising awareness of NIHR and other policy commitments to co-production may be a useful influencing strategy to engage more senior staff, as organisational support can be crucial to facilitate co-production. However, there is always the risk of tokenism and rhetoric (Flinders et al., 2016 ; Thomas-Hughes, 2018 ).

We considered within our project that the relationships between personal experiential knowledge, practice-based knowledge of healthcare staff, and dominant healthcare research need to be better understood if we are to co-produce knowledge together. We reflected on whether the aim of co-production projects is to modify the knowledge hierarchy completely, or to bring in experiential expertise/lived experience to influence the knowledge production process so the knowledge produced is more practical/effective/implementable. This second, more limited aim of making evidence more co-productively, so that it is more useful in practice may be more achievable, whereas modifying the dominant knowledge hierarchy was beyond our scope and influence.

Communication and relationships

The above dimensions of power (Lukes, 2005 ) have been augmented and brought together into a broader theoretical framework (Haugaard, 2012 ), which also incorporates ‘power with’ (Arendt, 1970 ), where emancipatory power can be harnessed through our ‘capacity to act in concert’. Arendt’s work highlights how we can collectively use our power together in more empowering ways. This links with a key principle of co-production, reciprocity, where everyone benefits from working together.

Consideration of what different team members want from working together, and therefore what reciprocity means within a project is needed. We discussed in the interdisciplinary workshops how the kind of benefits wanted by public contributors might include developing skills, confidence and work experience, and meeting such expectations may not usually be considered as research aims. Through our project we saw how co-production is strongly reliant on good communication and relationships. Strong facilitation and chairing skills are needed within meetings, to encourage everyone to contribute and challenge unhelpful behaviours, e.g., using jargon, or one person speaking a lot to the exclusion of others. People in our workshops discussed how some public contributors might need additional support to get more involved, e.g., having pre-meetings to help people get to grips with some information and/or issues, or the provision of materials in different accessible formats. If a co-production project includes people with specific communication needs, the group may need additional time and skills to be able to offer ways of working that are suitable for all. The NIHR is encouraging researchers to involve communities and groups that are often excluded. This means more outreach work to go out and meet with people in the places that they find accessible and comfortable, which can include project meetings in community locations, which may require additional resources.

Developing relationships and trust between team members may take time and requires emotional work. In our workshops we discussed how if the public contributor role includes sharing personal experiences for the benefit of the project, then researchers may also need to drop the ‘professional’ mask and share more personally and expose their own vulnerabilities (Batalden, 2018 ) to support more equal relationships. The challenges of university structural hierarchies were also discussed, including how it was often the responsibility of more ‘junior’ (i.e., lower in the hierarchy) researchers, and often women, to do the relational work (Lenette et al., 2019 ). Senior researchers do not necessarily understand the implications of co-production, for example one person shared how their Principal Investigator assumed that having a public contributor on the team would increase capacity and speed work up, unappreciative of the extra time needed for support, training and communication, including at the weekends, when public contributors could be carrying out work. Meeting the support and learning needs of team members can be challenging, both for researchers and public contributors, as co-produced research may take researchers outside the skills and knowledge usually expected in their professional environment. Even when these needs within a co-production project are recognised, research funders may not understand the resource and capacity implications.

A key element of running a co-production project identified within our work was the ongoing need for time to reflect on group processes to support and maintain different ways of working. Finding time for reflection can be challenging alongside creating an environment where everyone can honestly reflect on what it’s like to be in the group. This requires strong facilitation skills, particularly if there are tensions and conflicts. Addressing communication and relationship challenges are key to developing and sustaining a sense of shared ownership, and we outline some helpful practices in Table  2 .

Reflections on our own attempts at co-production

The conception of our project came initially from conversations between a researcher and public involvement specialist with previous experience as a service user and user-controlled research, wanting to create a space to share interdisciplinary learning between everyone about co-production. It could be argued that as the generation of the idea did not include public members in this first discussion it was not truly co-produced. We acknowledged that there were gaps between the lessons our project produced, and how the project itself had been carried out. It was very challenging to implement all INVOLVE principles (Hickey et al. 2018 ), and we question the extent to which they can ever be fully realised within our current contexts. Practically, we found that we should have allocated more resources to payment of our public contributors to take on additional roles. A focus on relationships and reflection was hard to maintain in the face of a small group trying to deliver an ambitious project to time, alongside other competing commitments. However, in our own reflective discussions we acknowledged that a sense of ongoing commitment to the project from everyone felt key to our group process and successfully getting the project done. In writing this article we met together several times to plan and develop sections, tables and points we wanted to get across. However, the actual writing tended to fall to the academics and public involvement specialist, who had more of the technical knowledge of what was expected. Demands of time, the juggling of commitments, and lack of resources meant that writing the article was not truly ‘co-produced’. Indeed, through the process, a public contributor co-author said they found the reviewers’ comments ‘a bit overwhelming’, with uncertainty of how to approach this. Another public contributor co-author expressed similar experiences with reviewers comments on another paper they had previously co-authored. The publication process can be a challenge to researchers as well, who are more familiar with these traditional academic practices.

Sharing power in the face of embedded hierarchies and inequalities is an obvious challenge for co-production. The gap between co-production principles and practice is a tricky territory. Working with everyone who is interested in an issue, having a focus on meeting the priorities of communities and people we work with, and co-producing all aspects of a project from beginning to end will be difficult to deliver in many projects in health and social care research. Working directly with members of the public is likely to require more adaptation of research project processes and to ‘usual ways of doing things’, alongside additional time and resources. People have different skills and uneven access to resources, and people may need considerable training and support to work together more equally. However, our experience is that funders do not necessarily understand this and doing co-production on a small budget can be particularly challenging. Time investment and the emotional work required to build relationships necessary for successful co-production is both under-appreciated and under-resourced. This reflects disparities in power between those who do this work and those who hold most power in universities. Recognising, recording, documenting and consistently budgeting for this work may help to make it more visible. Timing of funding is also crucial as many research teams do not have access to institutional ‘core’ funding, or seed funding grants, for public contributor involvement at the research development stage. As it is unlikely that most co-production projects will be able to include people with all the relevant perspectives and skills it is important to actively discuss and agree who can be involved and to be open about and discuss restrictions, which can be an act of power in itself.

Oliver and Boaz ( 2019 ) want to ‘open the door’ to more critical multidisciplinary accounts of evidence production and use, highlighting that some people want to direct energies to democratise knowledge for all. Interdisciplinary lessons from this project question the extent to which co-production processes can enable this, given the challenges we have highlighted. We consider that the jury is still out on the viability of co-production in the context of health and social care research. While some (Rose and Kalathil, 2019 ) find the promise of co-production untenable in mental health, we hope we can find a meaningful way forward. However, ‘putting what we already know [about co-production] into practice’ (Oliver and Boaz, 2019 ) can be very challenging. Our own experiences led us to reflect that to be working toward co-production principles means that you have to consistently be challenging ‘business as usual’—we consider a key point here is how to maintain sufficient self and team support to keep trying to do this in practice. Establishing reflective processes that encourage consideration of power issues are likely to be essential. Our approach to help ourselves and others navigate the challenges of co-production has been to identify ways in which groups can start to address power issues as highlighted in Tables  1 and 2 , and to develop practical freely available outputs including a map of resources and reflective questions (Farr et al., 2020 ; Davies et al., 2020 ). We need to understand more about how effective these strategies are, and whether co-production really does make a difference to the use of research. We need to encourage honest reporting of projects, their outcomes and the balance between the benefits and challenges of trying to implement the principles. However, power structures may mitigate against reporting of challenges and problems in research. Other research gaps include understanding what projects will benefit most from a co-production approach. Can co-production deliver more practical and implementable research findings, and if so how? How do we best challenge and change some of the structural inequalities within academia that impede co-production (Williams et al., 2020 )? How do we integrate experiential, practice and research-based knowledge to improve health and social care?

Our experiences on this project highlight the ongoing challenges to truly put the principles of co-production into practice. During this project we used the phrase ‘I am always doing what I can’t do yet in order to learn how to do it’ (van Gogh, 1885 ), to illustrate our limitations, yet continual striving toward an ideal. The quote continues ‘…I’ll end by saying that the work is difficult, and that, instead of quarrelling, the fellows who paint peasants and the common people would do wisely to join hands as much as possible. Union is strength…’ (van Gogh, 1885 ). Forgiving the dated language and connotations of this quote, the principles of joining hands and facilitating union are important co-production ideals that we continually need to remember, relearn and put our hearts into practising.

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Acknowledgements

This project was funded by the University of Bristol Public Engagement Seed Funding and Research Staff Development fund. It was supported by the National Institute for Health Research (NIHR) Applied Research Collaboration West (NIHR ARC West). The views expressed in this article are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. Many thanks to everyone who attended our workshops, got involved in and supported the project to help us develop our resources and training. We couldn’t have done this with you!

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Farr, M., Davies, P., Andrews, H. et al. Co-producing knowledge in health and social care research: reflections on the challenges and ways to enable more equal relationships. Humanit Soc Sci Commun 8 , 105 (2021). https://doi.org/10.1057/s41599-021-00782-1

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Making Sense of Research in Nursing, Health and Social Care

• Pam Moule - University of the West of England, UK
• Description

What is research and how does it work in the context of nursing, health and social care?

Now in its 7 th  edition, this introductory guide provides you with a concise overview of the different research methods and terminology that you will come across when undertaking research in any course related to nursing, health and social care. The book’s easy-to-follow structure takes you from research novice to confident researcher, helping you to make sense of research and understand how it is implemented in healthcare practice.

The new edition includes:

• Updates in line with the 2018 NMC standards, with more information on the impact of GDPR, consent and vulnerable groups, Personal and Public Involvement (PPI), and work-based projects.
• Improved case examples of real research, with more on group work, poster presentations, research output and dissemination, literature reviews, and dissertations.
• Upgraded activities that include reflective exercises, critical appraisal tools, a dissemination plan, and a glossary, all in the book.

This is essential reading for undergraduate and postgraduate students within the health and therapy professions, nurses, midwives, physiotherapists, radiographers, occupational therapists, speech and language therapists, and paramedics.

See what’s new to this edition by selecting the Features tab on this page. Should you need additional information or have questions regarding the HEOA information provided for this title, including what is new to this edition, please email [email protected] . Please include your name, contact information, and the name of the title for which you would like more information. For information on the HEOA, please go to http://ed.gov/policy/highered/leg/hea08/index.html .

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Some books reach their silver anniversary and start to look dated and lose their relevancy. Making Sense of Research in Nursing, Health and Social Care however, has renewed and refreshed at each edition and maintains its applicability for today’s health and social care professionals. 

One of the marks of a good textbook is its ability to appeal to readers across professional boundaries and with varying levels of experience in the topic at hand; Moule achieves this both engaging those new to research as well as providing different insights for those with more research knowledge and experience. One of the stated intentions of the book is to make research interesting and in so doing to help practitioners in their adoption of research and evidenced based practice within their work. Moule achieves this with the use of an accessible writing style which is at once both engaging and thought provoking. I would recommend this book as a must have on the shelf for any student of health and social care be they a first year undergraduate or a more experienced individual engaging in post graduate studies.

Evidence-based practice is crucial for the modern healthcare practitioner. Students can often shy away from the topic of research thinking that the subject is too complex for them. However, the benefits of this book in guiding them through the subject include: easy to read short sections with headings, clear key messages at the beginning and end of each chapter and links to current, credible sources of evidence to expand their reading further. Some students find it difficult to seek out credible secondary sources and this book gives them links to guidelines and reports which would be appropriate to inform their assignment work.

Books about the research process are not rare but few authors can clarify the basics with such ease like Pam Moule. This textbook is easy-to-read, speaks to the research novice in accessible language, and leaves the reader feeling well-initiated in research literacy. Without hesitation I would endorse this textbook for undergraduate health and social care students who will draw from it from the first term of study to the last. The chapters take the reader on a journey through critical reading right through to the fundamentals of research project design, and instill habits of systematic thought and process in all elements of research. Included are a number of helpful links and templates as well as examples to aid visualization of new concepts. This book is the perfect springboard to launch health and social care students into evidence-informed practice without overwhelming and scaring them off from what can undoubtedly become a more complex topic with further reading.

This is an informative and easy to read book, which introduces the students to research and directs them through the research process. I have used previous editions of this book and have it on the reading list for research modules I teach to both undergraduate and postgraduate students. The use of practice examples and scenarios clearly demonstrate research in action in health and social care. This new 7th edition will be a valuable addition to the reading list on my modules.

The previous editions of this book have been a steadfast resource and the ‘go to book’ for all levels of paramedic students studying at undergraduate level. The seventh edition of this book does not disappoint and will be the new ‘go to’ edition for current students who want to understand how to make sense of research in health and social care. The format of the book makes it easy to access the information making it a valuable and informative resource for all students in healthcare settings, and especially useful when undertaking a final project/dissertation.

This book is an excellent text that will provide an invaluable resource to health and social care practitioners who are new to research or those undertaking projects. The detailed discussion of the research process is written in an informative and authoritative way that informs the reader and makes the research process and terminology accessible.

Excellent - I will be directing students to this resource to support learning for enquiries into health and social care research.

Such a clear and easy to read text. A seminal volume!

Easy to understand for L5 students, applied examples and clear explanations.

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• Published: 17 April 2017

Understanding relevance of health research: considerations in the context of research impact assessment

• Mark J. Dobrow 1 ,
• Fiona A. Miller 1 ,
• Cy Frank 2 &
• Adalsteinn D. Brown 1  

Health Research Policy and Systems volume  15 , Article number:  31 ( 2017 ) Cite this article

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With massive investment in health-related research, above and beyond investments in the management and delivery of healthcare and public health services, there has been increasing focus on the impact of health research to explore and explain the consequences of these investments and inform strategic planning. Relevance is reflected by increased attention to the usability and impact of health research, with research funders increasingly engaging in relevance assessment as an input to decision processes. Yet, it is unclear whether relevance is a synonym for or predictor of impact, a necessary condition or stage in achieving it, or a distinct aim of the research enterprise. The main aim of this paper is to improve our understanding of research relevance, with specific objectives to (1) unpack research relevance from both theoretical and practical perspectives, and (2) outline key considerations for its assessment.

Our approach involved the scholarly strategy of review and reflection. We prepared a draft paper based on an exploratory review of literature from various fields, and gained from detailed and insightful analysis and critique at a roundtable discussion with a group of key health research stakeholders. We also solicited review and feedback from a small sample of expert reviewers.

Conclusions

Research relevance seems increasingly important in justifying research investments and guiding strategic research planning. However, consideration of relevance has been largely tacit in the health research community, often depending on unexplained interpretations of value, fit and potential for impact. While research relevance seems a necessary condition for impact – a process or component of efforts to make rigorous research usable – ultimately, relevance stands apart from research impact. Careful and explicit consideration of research relevance is vital to gauge the overall value and impact of a wide range of individual and collective research efforts and investments. To improve understanding, this paper outlines four key considerations, including how research relevance assessments (1) orientate to, capture and compare research versus non-research sources, (2) consider both instrumental versus non-instrumental uses of research, (3) accommodate dynamic temporal-shifting perspectives on research, and (4) align with an intersubjective understanding of relevance.

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Various levels of government in Canada collectively invest multiple billions of dollars in health-related research per annum, above and beyond investments in the management and delivery of healthcare and public health services. In recognition of this sizeable collective commitment, much work has focused on the impact of health research to explore and explain the consequences of these investments and inform strategic planning. Relevance is tacit in the increased attention to the usability and impact of health research. Additionally, research funders increasingly engage in relevance assessment as an input to decision processes; yet, it is unclear whether relevance is a synonym for or predictor of impact, a necessary condition or stage in achieving it, or a distinct aim of the research enterprise. Therefore, the main aim of this paper is to improve our understanding of research relevance as it relates to research quality and research impact, with specific objectives to (1) unpack research relevance from both theoretical and practical perspectives, and (2) outline key considerations for the assessment of research relevance.

Globally, there has been increasing critical assessment of the value of health research investments [ 1 – 3 ], with growing interest in research impact assessment (RIA) in the health sector [ 4 – 6 ]. RIA focuses on understanding how research activity can directly and indirectly advance knowledge, influence decision-making, and effect health and socio-economic outcomes, with a small but growing body of work seeking to develop better measures to evaluate (and ideally attribute) the returns on health research investments [ 6 ]. The Canadian Academy of Health Sciences (CAHS) released a comprehensive report on the subject in 2009 that presented a call for action, with a number of recommendations including establishing collaborative efforts among Canadian research funders to advance frameworks and sets of indicators and metrics for health research impact [ 4 ]. The CAHS impact framework [ 4 ], which drew on the Buxton and Hanney [ 7 ] ‘payback model’, among others, has provided a thoughtful starting point for considering the impact of health research in Canada. Subsequent work by Alberta Innovates – Health Solutions (AIHS) on a Research to Impact Framework (described in Graham et al. [ 8 ]) provides further insights on operationalising RIA frameworks for health research in Canada.

These initiatives are part of a broadly discussed shift in approaches to knowledge production, from an emphasis on investigator-initiated, curiosity driven work judged and guided by scientists, to expanded approaches to knowledge production, drawing on a wider set of actors and approaches, and emphasising relevance and usability. This shift from science produced by and for scientists to knowledge production that is “ socially distributed, application-oriented, trans-disciplinary, and subject to multiple accountabilities ” [ 9 ] has been characterised as a shift from ‘mode 1’ to ‘mode 2’ knowledge regimes. In the language of mode 2, interest in research ‘impact’ expresses a concern for application or consequence, and – in the economic language of return on investment – a concern that the yield is at least equal to the investment in the research itself. Extending this reasoning, interest in research ‘relevance’ may reflect a concern for accountability – linking research to the actor(s) for whom the research is performed and who will, ideally, put it to use.

In Canada, interest in research impact and relevance appears to have been felt most forcefully in the context of health services and policy research, which has long been encouraged to orient to the needs of policymakers, health system planners and related decision makers. More recently, there has been increased attention to ensuring that all forms of health research are ‘patient oriented’ – that is, that the research is prioritised, conducted and applied in ways that are accountable to this important end user. This call has been picked up on several fronts, including by the Canadian Institutes of Health Research (CIHR), which released its Strategy for Patient-Oriented Research (SPOR) in 2011. The SPOR vision “…is to demonstrably improve health outcomes and enhance patients’ health care experience through integration of evidence at all levels in the health care system ” [ 10 ]. In some respects, it represents a fundamental re-orientation for the primary funder of health research in Canada.

Though relevance is tacit in attention to research impact and the wider concern with mode 2 knowledge production, explicit attention to the meaning or measurement of research relevance is limited. The CAHS and AIHS frameworks, for example, acknowledge ‘relevance’ of health research but do not clearly define the term nor describe approaches for assessing it [ 4 , 8 ]. Rather, these frameworks emphasise the role of broad stakeholder engagement approaches and feedback mechanisms as methods for addressing relevance. For example, the AIHS framework notes the challenge of, and need to, move “ …beyond the collection of traditional scientific indicators […] to include measures of greater interest to the broader stakeholder community… ” [ 8 ] without stating explicitly how “ greater interest ” or related concepts such as relevance should be judged. As currently constructed, these RIA frameworks provide important advances in how we think about the impact of health research, but they were not intended to provide guidance specifically to the assessment of the relevance of health research.

Despite this lack of specific guidance on research relevance from a scholarly or measurement perspective, attention to it as a practical component of health research funding and organisation is evolving. There is, for example, growing use of ‘relevance assessment’ by research funders. The Canadian Health Services Research Foundation, in particular, was an innovator in incorporating relevance review into its applied research funding programmes, including promoting partnerships and knowledge translation (KT) with health system stakeholders [ 11 ]. Current applications for funding from the Institute of Gender and Health at CIHR go through ‘relevance review’ ( http://www.cihr-irsc.gc.ca/e/45212.html ). Similarly, applications for Ontario’s Health System Research Fund are judged based on ‘internal review of relevance and impact’ ( http://www.health.gov.on.ca/en/pro/ministry/research/cihr.aspx ). However, given the lack of conceptual clarity on research relevance, and in particular, how relevance assessment aligns with and differs from impact assessment, there is a critical gap in our understanding that has implications for both its contemporary and ongoing application and our ability to make sound research investment decisions.

This work was commissioned by the Ontario SPOR SUPPORT (Support for People and Patient-Oriented Research and Trials) Unit (OSSU) – one of several units established at provincial and regional levels across Canada to work with CIHR in pursuing the SPOR. Like other research organisations, OSSU saw the need to consider the relevance of the research it supported, and it established both scientific and relevance advisory committees as part of its original governance structure [ 12 ], tasking the latter to “ …develop a measure, or small set of strategic measures, that serves to inspire the Ontario research, implementation, provider and patient communities to come together to make a difference for patients ” [ 12 ]. In the spirit of research and scholarship, OSSU then asked what exactly this commitment to research ‘relevance’ entailed.

Our approach to answering this question involved the scholarly strategy of review and reflection. As with the early investigations into research impact assessment, we were surprised to find so little reflexive attention to the topic within the health research community [ 13 ]. We prepared a draft paper based on an exploratory review of literature from various fields, and gained from detailed and insightful analysis and critique at a roundtable discussion with a small group of key health research stakeholders. We also solicited review and feedback from a small sample of expert reviewers.

The structure of our paper is as follows. First, to ‘unpack’ the concept of relevance, we review theoretical literature and then consider practical work both from within and outside the health sector, to ask what has been argued and concluded about the nature of relevance and its appropriate assessment. Next, we outline a series of forward-looking considerations for assessing research relevance and conclude with reflections on how research relevance assessment fits with evolving interest in RIA.

Unpacking relevance

Theoretical perspectives.

Before considering the relevance of health research, we need to step back and consider what we mean by the term ‘relevance’. A range of descriptors is often used to define relevance, including ‘pertinent to…’, ‘bearing upon…’, ‘connected with…’, or ‘appropriate to…’, ‘…the matter at hand’, as well as ‘germane’, ‘apropos’, ‘material’, ‘applicable’ and ‘satisfactory’. A large body of dedicated theoretical work on relevance, drawn from many fields and perspectives, such as computer science, information science, statistics/probability theory, artificial intelligence, cognitive science, epistemology, linguistics and jurisprudence [ 14 ], reflects its importance but also the challenge for establishing a common understanding of the term [ 14 , 15 ]. For example, Gärdenfors [ 16 ], in his discussion on the logic of relevance, noted that “ …relevance ought to be a central concept in the philosophy of science… ” given the position that “ …it is only relevant information that is of any importance… ” (p. 351). However, from a ‘research’ relevance perspective, the theoretical work on relevance has been linked to ‘information’, ‘evidence’, ‘reasoning’, ‘argument’ and ‘decision’ [ 15 – 18 ], each presenting variable framing that impedes practical definition or consistent comprehension of the term. Floridi [ 14 ] recently suggested that existing theories are “ …utterly useless when it comes to establish the actual relevance of some specific piece of information ” (p. 69), and goes on to advance a ‘subjectivist’ interpretation, with relevance judged by the questioner. While a subjectivist approach to relevance is intuitively appealing, its contribution to the assessment of research relevance presents particular challenges that we will discuss later in the paper.

Another approach to unpacking relevance is to consider the theoretical model behind the broad-based research strategies that have governed research investments and policies in high-income countries since the end of the Second World War. For the better part of the 20th century, a linear model was the dominant conceptual framework, whereby basic research was viewed as a necessary input for applied research, which then led to development and production [ 19 , 20 ]. In the late 1990s, an alternate thesis was introduced when Stokes proposed a new model for broad-based research strategy – known as Pasteur’s Quadrant – that highlighted the conceptual relationship between the ‘quest to understand’ and ‘practical needs’ [ 21 ]. While some research is clearly focused on advances in basic research (e.g. Niels Bohr’s foundational research on atomic structure and quantum theory), and some research is clearly focused on applied problems (e.g. Thomas Edison’s practical inventions), Stokes emphasised the potential for use-inspired basic research (e.g. Louis Pasteur’s foundational research on microbiology that addressed contemporaneous population health challenges). Pasteur’s Quadrant invokes consideration of ‘relevance’ with some commentators framing the two-by-two relationship as the relevance for advancement of basic knowledge and the relevance for immediate application [ 22 ]. Stokes’ model adds conceptual insight on the role of relevance when considering the value of research to society, however, it was not intended to specifically conceptualise the term and does not distinguish it from other related concepts such as research impact or value. Therefore, to provide further insights, we next consider relevance in practical settings.

Health sector perspectives

In the health sector, the idea that research should be ‘relevant’ is commonplace. Commitments to ‘knowledge translation’ and the ‘knowledge to action cycle’ [ 23 ] emphasise issues of relevance and provide considerable insight into approaches to ensuring research usability and use. At the same time, the health research community has given disproportionate attention to issues of research quality, with an emphasis on internal validity that may downplay external validity and suggest some tension between rigour and relevance. Thus, though the concept of relevance is of central importance to the health research enterprise, the failure to unpack it or explore it both theoretically and practically leaves room for misunderstanding and misapplication.

In the health sector, research relevance often arises as a practical question of the ‘fit’ between a body of knowledge or research approach and a specific field or issue (e.g. public health, primary healthcare, healthcare access, genomics, alternative healthcare, healthcare reform in rural areas). The results of two recent International Society for Pharmacoeconomics and Outcomes Research task forces take this approach. The task forces developed questionnaires to assess the relevance and credibility of research other than randomised controlled trials (e.g. observational research, meta-network analysis) to inform healthcare decision-making [ 24 , 25 ]. Both make similar observations about relevance, reinforcing the subjectivist approach noted earlier, and can be summarised by the following statement by Berger et al. [ 24 ]:

“ Relevance addresses whether the results of the study/apply [sic] to the setting of interest to the decision maker. It addresses issues of external validity similar to the population, interventions, comparators, outcomes, and setting framework from evidence based medicine. There is no correct answer for relevance. Relevance is determined by each decision maker, and the relevance assessment determined by one decision maker will not necessarily apply to other decision makers. Individual studies may be designed with the perspective of particular decision makers in mind (e.g. payer or provider) ” (p.148, emphasis added).

Research relevance in health is also noted in discussion and debate regarding the value of qualitative research relative to the more established forms of quantitative health research. For example, Mays and Pope [ 26 ] suggest that qualitative research can be assessed “… by two broad criteria: validity and relevance ”. Their further discussion provides some insight into the several ways that research might be relevant, suggesting that:

“[r] esearch can be relevant when it either adds to knowledge or increases the confidence with which existing knowledge is regarded. Another important dimension of relevance is the extent to which findings can be generalised beyond the setting in which they were generated ” [ 27 ].

The work of Mays and Pope positions research relevance amidst the longstanding tension between internal and external validity. This tension reflects opposing foci on internal validity as the quality/rigour of research methodology and external validity as the applicability/transferability of research to other settings or contexts. While external validity is not the only measure of relevance – as research may remain relevant to some contexts even when not generalisable to others – it is an important component, and one that has not always attracted sufficient attention. For example, the Canadian health research community has focused considerable practical attention on internal validity as a critical component of evidence for clinical and health policy decisions. Evidence-based medicine, the Cochrane Collaboration, the Canadian and United States task forces on preventive healthcare/services and a long list of aligned groups have developed and established many tools to assess the quality of research evidence (e.g. GRADE [ 28 ]), with a predominant focus on issues of internal validity, and an emphasis on evidence hierarchies that is sometimes seen to be incompatible with ‘real world’ relevance. The relative lack of similar approaches or tools that focus on external validity in health research is notable, though movements to marshal evidence in support of sound public policy, such as the Campbell Collaboration, have attended to issues of external validity in other areas of health and social policy [ 29 ]. Further, there are emerging approaches and tools for documenting the external validity of health research and facilitating its use [ 30 ]. For example, WHO has supported the development of workbooks to contextualise health systems guidance for different contexts [ 31 ] and the field of local applicability and transferability of research has emerged to facilitate the adaptation of interventions from one setting to another, including the development of some well-documented tools like RE-AIM [ 32 ].

Alongside these emerging approaches and tools sits the established field of KT. KT has a strong history in Canada with a distinctive feature being a reliance on stakeholder engagement to support a commitment to improve research relevance. For example, the AIHS framework relies heavily on KT and stakeholder engagement approaches as part of its RIA, describing the mobilisation of knowledge through “ …a process of interactions, feedback, and engagement using a variety of mechanisms (e.g. collaborations, partnerships, networks, knowledge brokering) with relevant target audiences (i.e. actors and performers) across the health sector ” ([ 8 ] p. 362). Experience in stakeholder engagement, particularly with clinical, management and policy decision-makers, has become fairly extensive and there is now increased attention on engaging patients as core stakeholders in health research. If relevance is truly subjective, then KT efforts (including engagement, dissemination, promotion, communication) would appear to represent reasonable approaches for articulating, conveying and improving research relevance. However, if there are underlying elements of relevance that are more universal, then there is a risk that KT efforts – and subjectivist approaches to ensuring relevance – are akin to commercial marketing or communication strategies where the aim is to ‘sell’ more product and/or generate more influence that may not align with a more objective lens.

In sum, the health research community in Canada has a longstanding history of critically appraising research quality based on study design and research methodology, with greater emphasis on internal rather than external validity. As the same time, there is established expertise in KT, emphasising engagement with research users and adaptation to settings or contexts of use – approaches that may imply a subjectivist interpretation of relevance. Thus, while relevance is an important concept for the health research enterprise, its use is largely tacit and taken for granted.

Non-health sector perspectives

To unpack relevance further we consider some non-health sector perspectives that give attention to the term, often with formal definitions or taxonomies established. Examples include the legal, financial accounting, education and web search (information retrieval) sectors, each of which are briefly described below.

From a legal perspective, relevance has a specific meaning that relates to the admissibility of evidence in terms of its probative value (i.e. the extent to which evidence contributes to proving an important matter of fact) [ 33 ]. For example, a common objection to legal testimony or evidence is that it is ‘irrelevant’ [ 34 ]. Legal processes for considering the admissibility or legal-relevance of evidence are firmly established, requiring explicit declaration of evidentiary sources and direct consideration of that evidence as it relates both to a specific case and related historical precedents, something that is undeveloped in the health sector [ 35 ]. It is the formality, explicitness and retrospective nature of this process, which is directly associated with a specific case (or decision), that is characteristic of the consideration of relevance in the legal context.

Financial accounting provides another perspective on relevance. In this field, relevance is viewed as a fundamental component of generally accepted accounting principles. Relevance and materiality are emphasised such that accountants and auditors focus on financial information that meets the decision-making needs of users and is expected to affect their decisions. In financial accounting, ‘value relevance’ provides a more focused perspective on relevance, defined as “ …the ability of information disclosed by financial statements to capture and summarise firm value. Value relevance can be measured through the statistical relations between information presented by financial statements and stock market values or returns ” [ 36 ]. Similar to the legal perspective, the financial accounting perspective on relevance is set with a formal context, where the focal point (i.e. financial performance) is clear and principles (i.e. generally accepted accounting principles) and processes (i.e. financial reporting and auditing) are clearly established and monitored.

Education provides a slightly more expansive approach to operationalising relevance, given the more general aim of the enterprise. In the United States, the Glossary of Education Reform [ 37 ] notes that “ …the term relevance typically refers to learning experiences that are either directly applicable to the personal aspirations, interests, or cultural experiences of students (personal relevance) or that are connected in some way to real-world issues, problems, and contexts (life relevance) ”. They further state that “ personal relevance occurs when learning is connected to an individual student’s interests, aspirations, and life experiences ”, while “ life relevance occurs when learning is connected in some way to real-world issues, problems, and contexts outside of school ”. A similar framing of relevance in this context suggests that it “…extends the learning beyond the classroom by teaching students to apply what they are learning to real world situations ” [ 38 ]. While the education sector also makes numerous references to a ‘rigour and relevance’ dyad [ 39 ] in contrast to the dominance of the internal validity focus in healthcare, it is the prominent dual focus on ‘personal’ relevance (with its subjectivist orientation) and ‘life’ or ‘real world’ relevance (with its more universal orientation) that seems to most clearly define the education sector’s perspective on relevance.

One of the most intensive and competitive sectors focusing on relevance is the web search (or information retrieval) field. This includes dominant search engines such as Google and Bing, as well as a wide range of commercial and social media sites such as Amazon, eBay, Facebook and LinkedIn, that compete either directly or indirectly on their ability to identify relevant information in response to user queries. Therefore, the ability of these organisations to advance the theory and practice related to relevance is fundamental to their success. For example, Google was built upon the effectiveness of its search algorithm, which is in a constant state of evolution. Both explicit and implicit approaches to assess relevance are used to contribute to search algorithm refinements [ 40 ]. The explicit approach focuses on ‘relevance ratings’, whereby evaluators (e.g. human raters) are contracted to assess the degree of ‘helpfulness’ of search results paired to specific search queries [ 41 ]. The implicit approach to assess relevance monitors and aggregates search behaviour of millions of users who are likely unaware that their behaviour is being assessed. Google has more recently advanced ‘personalised relevance’, which uses past individual search behaviour to personalise/tailor future search results for the same individual. Pariser has critiqued this concept as “ the filter bubble ” [ 42 ], warning that Google’s intent to optimise search algorithms for personal relevance creates a “ …personal ecosystem of information… ” that limits the diversity of search results and promotes insularity. This personal relevance is situated within the pervasiveness of social media, which facilitates the advancement of ‘social relevance’. Personal and social relevance highlight two important orientations towards relevance – one built on increasingly detailed understanding of individual preferences and the other reflecting the growing power and increasing accessibility of crowd-sourced perspectives. Overall, web search has made important contributions to how we understand and operationalise relevance, including the use of increasingly sophisticated explicit and implicit feedback mechanisms and the ability to draw upon and analyse big data sets. Web search has also exposed the contrasting orientations of personal and social relevance that underscore the challenges of combining or integrating different relevance assessments.

These non-health sector perspectives on relevance highlight several considerations. First, they reinforce general findings that point to perspective, decision context, timeliness and precision of focus or ‘fit’ as key elements of relevance. Additionally, they highlight a few distinctive considerations. The formalistic contexts of financial accounting and law emphasise issues such as precedent and legitimacy, implying that relevance in a research sense might require the demonstration of some legitimate or credible association between research and its use or user, among other considerations. Further, the complex consumerist world of social media highlights some of the challenges of a purely subjectivist definition of relevance. Whereas the International Society for Pharmacoeconomics and Outcomes Research guidance takes a subjectivist stance in suggesting that, “[t] here is no correct answer for relevance ” [ 24 ], the “ filter bubble ” criticised by Pariser [ 42 ] suggests otherwise. Relevance solely to the personally-perceived interests of a research user is unlikely to adequately serve the collective commitments to health and health equity that are especially germane to the health research enterprise.

Forward-looking considerations for assessing the relevance of health research

To this point, we have endeavoured to unpack relevance from theoretical and practical perspectives. In light of these insights and in the context of persistent interest in research impact assessment and evolving interest in research relevance, we now turn to some specific forward-looking considerations for research relevance assessment (RRA).

Relevance of research versus everything else

The first consideration for RRA is the acknowledgement that research is only one of many sources of insight to inform the needs or actions of research users. A research user is influenced by a wide range of political, legal, media, economic and other contextual information, interactions and experiences, as well as prevailing organisational governance, leadership, culture and values that all serve to complement (and often dominate) any insights that might be derived from research [ 43 ]. This reality implies that ‘relevance’ has a different meaning for researchers and research users. Researchers are typically interested in the relevance of a specific research product or activity for identifiable actions of (potentially) multiple research users; relevance is here judged relative to both the perceived needs of research users, and the extent and content of other related research. In contrast, research users are typically focused on identifying multiple relevant inputs to guide a specific action, only some of which may be research; relevance is here judged relative to both the research user’s needs and the form and content of the other inputs.

Given these distinct orientations to research relevance, RRA needs to be explicit about its comparative lens. Clear distinctions should be made between relevance based on the merits of the research product or activity (researcher lens) and relevance based on the relative value of research compared to other research and non-research sources (research user lens). RRA provides an opportunity to build more robust ways to characterise and assess the contribution of research to research users, including a more systematic and transparent articulation of anticipated research uses (akin to the Research Councils UK’s ‘Pathways to Impact’ [ 44 ] or descriptions of planned study design and methodological approach published in study protocols/registrations for randomised controlled trials or systematic reviews).

Beyond instrumental uses of research

The considerations noted above rely heavily on instrumental uses of research. Theoretically derived definitions of relevance, such as Floridi’s [ 14 ], tend to focus on the response to a specified question. This suggests a direct and tangible connection between research and its ‘use’. However, as Weiss [ 43 ] and others have observed, most types of research use are not instrumental, where use is documented and explicitly addresses a specific query or challenge for a research user. Rather, research use tends to be more conceptual, where use is indirect and evolves over time, or symbolic, where use may be politically or tactically motivated [ 43 ]. Research may also create externalities or unintended effects. For example, general research activity might support an engaged learning environment, interactive research relationships, and additional research-related discourse that provides benefits that are not attributable to any specific research product or activity. This has important ramifications for how research is funded and the role that relevance can play in that assessment. Ultimately, RRA needs to go beyond a singular understanding of research use as instrumental use, to develop better methods for capturing and assessing the relevance of the many non-instrumental uses of research.

The temporal factor

Another closely related consideration for RRA is the temporal context. Almost all research is conducted in a temporally defined period. Yet, while the quality of research is typically characterised by its methodology, which is a static feature typically not subject to temporal variation (e.g. the assessed quality of a randomised controlled trial should be consistent over time), relevance of research can be considered at any time (e.g. prior to the initiation of a research study or at different points in time post-completion) and is therefore subject to dynamic perceptions as they pertain to evolving action or decision contexts. Cohen [ 15 ] suggests that “ …relevance, like reasoning, has a prospective dimension as well as a retrospective one. It helps prediction as well as explanation ” (p. 182). The important insight is that, in contrast to research quality, the relevance of a specific research product can change over time, making assessment of research relevance more challenging.

This requires RRA to acknowledge the temporal factor and its associated implications for research relevance. At minimum, RRA should specify the temporal context as either pre-research (e.g. proposal/funding stage) or post-research (e.g. after research results have been produced). RRA at the pre-research stage focuses on proposed inputs and hypothetical outputs and outcomes, and may be more likely to overestimate instrumental research use and underestimate non-instrumental use. RRA at the post-research stage focuses mainly on the importance and value of actual outputs and tangible results, and may capture more non-instrumental research use. The pre-research stage is clearly aligned with research funding/investment processes, while the post-research stage can contribute to retrospective return-on-investment calculations and more general research impact assessment. However, employing this simple temporal categorisation should not lead us to lose sight of the dynamic, iterative nature of research relevance and the opportunity to assess it at interim and ongoing stages that captures re-interpretations or re-applications of research findings over time.

Moving from a subjective to an intersubjective understanding of relevance

An underlying theme in our review of relevance is subjectivity. Consider the broad scientific paradigms of positivism and interpretivism that are typically respectively aligned with research quality and research relevance. Research quality can be viewed as relating to characteristics or features that are assessed objectively, while research relevance may be seen as subjectively adjudicated. The subjective focus emphasises the variability of different perspectives and contexts and the suggestion that anyone can have a different take on the relevance of a specific research product or activity. For RRA, this reinforces a user-centred orientation to relevance assessment that privileges the judgment of the interrogator and raises the key question regarding who is positioned as the main arbiter of research relevance.

However, while relevance may never be characterised as universal, it could be argued that it is not purely subjective either. Rather, relevance may be more consistent with an intersubjective understanding that emphasises the extent of agreement or shared understanding among individual subjective perspectives representing a way to bridge the personal and the universal. The intersubjective view, while not presenting an objective approach to measuring relevance, does provide a road towards a meaningful and structured assessment of research relevance. It also emphasises the importance of representation in forging the intersubjective judgments that guide the research enterprise.

This paper has unpacked research relevance from different perspectives and outlined key considerations for its assessment. Alongside research impact assessment, research relevance seems increasingly important in justifying research investments and guiding strategic research planning. Indeed, judgments of ‘relevance’ are becoming a key component of the health research enterprise. However, consideration of relevance has been largely tacit in the health research community, often depending on unexplained interpretations of value, fit and potential for impact. Reviewing the various uses of relevance in health research, the concept is sometimes used as a synonym for research impact or positioned as a reliable predictor of later consequence. In many ways, research relevance seems a necessary condition for impact – a process or component of efforts to make rigorous research usable. However, relevance is not a necessary or sufficient condition to achieve impact. We expect that research that is relevant, and thus accountable to specific and legitimate users, will be impactful, but this may not necessarily be the case where other factors intervene. Additionally, we may expect that research that is impactful will be appropriately accountable – but again, this is not necessarily the case. Ultimately, relevance stands apart from research impact. Like rigour, relevance is a complementary but distinctive dimension of what it is that ensures ‘the good’ in health research.

While ‘relevance’ is ever-present, understanding of the concept in terms of health research is emergent and not well codified. To improve our understanding, this paper outlines four key considerations, including how research relevance assessments (1) orientate to, capture and compare research versus non-research sources, (2) consider both instrumental versus non-instrumental uses of research, (3) accommodate dynamic temporal-shifting perspectives on research, and (4) align with an intersubjective understanding of relevance. We believe careful and explicit consideration of research relevance, guided by transparent principles and processes is vital to gauge the overall value and impact of a wide range of individual and collective research efforts and investments. We hope this paper generates more discussion and debate to facilitate progress.

Abbreviations

Alberta Innovates – Health Solutions

Canadian Academy of Health Sciences

Canadian Health Services Research Foundation

Canadian Institutes of Health Research

knowledge translation

Ontario SPOR SUPPORT Unit

research impact assessment

research relevance assessment

Strategy for Patient-Oriented Research

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Acknowledgements

We acknowledge and appreciate the contributions of participants of a roundtable discussion to gather feedback on an earlier version of this paper. Participants included Simon Denegri, National Director for Public Participation and Engagement in Research, National Institute for Health Research (NIHR) UK, and Chair of INVOLVE, UK; Lee Fairclough, Vice-President, Quality Improvement, Health Quality Ontario; Michael Hillmer, Director, Planning, Research and Analysis Branch, Ontario Ministry of Health and Long-Term Care; John McLaughlin, Chief Science Officer and Senior Scientist, Public Health Ontario; Allison Paprica, Director, Strategic Partnerships, ICES; Michael Schull, President and CEO, ICES; and Vasanthi Srinivasan, Executive Director, Ontario Strategy for Patient-Oriented Research (SPOR) SUPPORT Unit (OSSU). We also want to thank John Lavis of the McMaster Health Forum for his very helpful comments on an earlier draft. Though we owe these individuals and organisations many thanks for their insights and support, we alone are responsible for the final product.

This work was commissioned by the Ontario SPOR Support Unit (OSSU). The executive director of the OSSU was one of the participants in a roundtable discussion to gather feedback on an earlier version of this paper, but beyond that, the OSSU did not have any role in the design of the study, collection, analysis or interpretation of the data, or writing of the manuscript.

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ADB acquired funding for the study. MJD, FAM and ADB conceptualised the study. MJD, FAM, CF and ADB participated in the review and writing of the manuscript. MJD, FAM and ADB participated in the roundtable discussion. MJD, FAM and ADB reviewed and approved the final version of the manuscript (CF passed away prior to submission of the manuscript).

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This article is dedicated to the memory of Dr Cy Frank, our co-author and esteemed colleague, whose untimely death occurred midway through development of this work. Among his many interests, Dr Frank was a champion for improving understanding of research impact assessment and provided many insights on the concept of research relevance, some of which we expand upon in this article. His many contributions to the health sector will live on, but he will be greatly missed.

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Dobrow, M.J., Miller, F.A., Frank, C. et al. Understanding relevance of health research: considerations in the context of research impact assessment. Health Res Policy Sys 15 , 31 (2017). https://doi.org/10.1186/s12961-017-0188-6

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Five amazing health research breakthroughs in the last 12 months

As unprecedented times highlight the importance of health research, we’re looking back over some of the most incredible advances from the national institute for health and care research (nihr) in 2020-2021 so far..

Have you become more interested in health research over the last year? If so, you’re not alone. 

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Five amazing health research breakthroughs

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• In 2020, the dexamethasone study compared the results of 2104 patients randomly selected to receive dexamethasone once per day for ten days, and 4321 patients randomly selected to receive usual care alone
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The conclusion of a 10-year trial in 2020 revealed that oral antibiotics could successfully be used to treat a common cystic fibrosis complication at home .

The study was funded by NIHR, sponsored by University Hospitals Bristol and Weston NHS Foundation Trust, and developed with researchers from The University of Nottingham’s School of Medicine.

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Handbook of Social Inclusion pp 1–17 Cite as

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Social inclusion emerged as a concept to respond to the increase of socially excluded and marginalized populations in the 1980s and 1990s. It has echoed pragmatics of “social, economic, and political participation” and engagement and can help to create “a sense of belonging” for divergent groups in society. Nowadays, social inclusion is perceived as a social determinant of health and plays an integral role in the promotion of health and well-being, particularly among those who are socially excluded and marginalized in society. The concept of social inclusion is explicitly related to equality, social cohesion, and human rights. The focus of social inclusion is on obstacles that prevent individuals from engaging meaningfully in society. It embraces a positive process rather than focusing on problems and difficulties experienced by people. Social inclusion emphasizes the essence of an inclusive society where people who lack the opportunity to engage in different aspects of society become more socially included. This chapter sets the scene of this handbook. It provides some background for further chapters in this handbook. First, it discusses the concept of social inclusion. Then it examines the closely linked concept of social exclusion. The next section is dedicated to social inclusive research methodologies that researchers can adopt to ensure greater social inclusion within society. The chapter concludes with discussions about means and strategies for the promotion of social inclusion in society.

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Research ethics and collaborative research in health and social care: Analysis of UK research ethics policies, scoping review of the literature, and focus group study

Roles Conceptualization, Data curation, Formal analysis, Methodology, Writing – original draft, Writing – review & editing

* E-mail: [email protected]

Affiliation Department of Health Policy and Department of Social Policy, Care Policy and Evaluation Centre, London School of Economics and Political Science, London, United Kingdom

Roles Conceptualization, Methodology, Supervision, Validation, Writing – review & editing

Affiliation Faculty of Health Studies, Jan Oyebode, Centre for Applied Dementia Studies, University of Bradford, Bradford, United Kingdom

• Chiara De Poli, 
• Jan Oyebode

• Published: December 22, 2023
• https://doi.org/10.1371/journal.pone.0296223
• Peer Review
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Current research ethics frameworks were developed on the footprint of biomedical, experimental research and present several pitfalls when applied to non-experimental social sciences. This work explores how the normative principles underpinning policy and regulatory frameworks of research ethics and the related operational processes work in practice in the context of collaborative health and social care research. The work was organised in three phases. First, UK research ethics policy documents were analysed thematically, with themes further organised under the categories of ‘Principles’ and ‘Processes’. Next, we conducted a scoping review of articles about research ethics in the context of collaborative health and social care research, published in English between 2010 and 2022. We then held an exploratory focus group with ten academic researchers with relevant experience to gather their views on how the research ethics system works in practice in England (UK). The thematic framework developed in the first phase supported the analysis of the articles included in the scoping review and of focus group data. The analysis of policy documents identified twelve themes. All were associated to both a principle and a related operational process. The scoping review identified 31 articles. Across these, some themes were barely acknowledged (e.g., Compliance with legislation). Other themes were extensively covered (e.g., The working of Research Ethics Committees), often to discuss issues and limitations in how, in practice, the research ethics system and its processes deal with collaborative research and to suggest options for improvement. Focus group data were largely consistent with the findings of the scoping review. This work provides evidence of the poor alignment between how the research ethics system is normatively expected to work and how it works in practice and offers options that could make research ethics more fit for purpose when addressing collaborative research in health and social care.

Citation: De Poli C, Oyebode J (2023) Research ethics and collaborative research in health and social care: Analysis of UK research ethics policies, scoping review of the literature, and focus group study. PLoS ONE 18(12): e0296223. https://doi.org/10.1371/journal.pone.0296223

Editor: Alberto Molina Pérez, Spanish National Research Council: Consejo Superior de Investigaciones Cientificas, SPAIN

Received: August 7, 2023; Accepted: December 7, 2023; Published: December 22, 2023

Copyright: © 2023 De Poli, Oyebode. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: All relevant data are within the paper and its Supporting Information files.

Funding: The Authors were funded by The Health Foundation, grant number 1274233. The funding source had no involvement in the study design; in the collection, analysis and interpretation of data; in the writing of the articles; and in the decision to submit it for publication.

Competing interests: Chiara De Poli had research grant funding from the National Institute for Health and Care Research, School of Social Care Research, grant number 106152/CBF/LSECDP-IF14. She currently has, as co-applicant, research grant funding by the National Institute of Health and Care Research - Three Schools Dementia Programme, grant number 102645/3SDRP/LSEACH-DP05. Jan Oyebode currently has research grant funding from the National Institute for Health Research, grant number 204266, Social Care for People with Young Onset Dementia.

Introduction

Research ethics and governance represent the regulatory and institutional cornerstones for the conduct of research involving human participants, aiming to oversee its ethical quality and protect research participants from harmful research practices. Since the Nuremberg code (1947) [ 1 ], respect for autonomy, justice, beneficence (i.e., to do good), and non-maleficence (i.e., to do no harm) have been recognised as core ethical principles of biomedical, experimental research involving human participants. These principles were embedded in international guidance and regulation (e.g., the Declaration of Helsinki by the World Medical Association (1964) [ 2 , 3 ], the International Ethical Guidelines for Biomedical Research Involving Human Subjects of the Council for International Organizations of Medical Sciences (CIOMS, 2016) [ 4 ] and in national research ethics frameworks (e.g., the US Belmont Report (1978) [ 5 ], the Canadian Tri-Council Policy Statement [ 6 ], and the UK Policy Framework for Health and Social Care Research [ 7 ]). Over time the application of this research ethics framework has been expanded from regulation of traditional biomedical research to also regulate social sciences, including health and social care research.

Extant research on research ethics has underscored the intrinsic complexity of establishing whether ethics oversight results in ethical research and participant protection. The use of processes and structures as surrogate measures for effectiveness of research ethics has been found particularly unsatisfactory [ 8 – 10 ]. Although there are several reasons to believe that research ethics processes and structures contribute to ensuring ethical research and the protection of research participants, little empirical evidence is available on whether and how research ethics institutions actually achieve these ends [ 9 , 11 , 12 ]. Alongside assumed benefits, negative or unwanted consequences of the research ethics system have been documented. At the procedural level, the apparent arbitrary nature of decision-making, long delays in obtaining research approvals, and the bureaucratic restrictions imposed on the conduct of studies are a frequent source of problems [ 8 , 13 ]. At the organisational level, the establishment of a research ethics industry [ 14 ], with a perceived emphasis on box ticking [ 15 , 16 ] and rule fetishization [ 17 ], ultimately concerned with issues around risk, litigation, and institutional reputation, seems to have contributed to an ‘ethics creep’ [ 17 ]. At an epistemological level, the problems of using a framework rooted in experimental, biomedical research to assess social sciences and research using non-experimental methods (e.g., big data research [ 18 ], social media research [ 19 ], research using machine learning [ 20 ], ethnography [ 21 ] and digital ethnography [ 22 ]) are well documented [ 23 – 26 ].

Research using qualitative or mixed methods [ 27 ] and less codified and predictable designs, such as participatory research (e.g., participatory action research, community-based participatory research) [ 28 ] and research using collaborative approaches (e.g., co-creation, co-design, co-production) [ 29 ], have been particularly affected. As a consequence of the fundamental poor alignment between the biomedical framework of research ethics and qualitative, participatory, and collaborative research, researchers have described their experience of navigating the research ethics system as “jumping through hoops” or “walking a tightrope”, or “something to get through” [ 30 , 31 ]. The requirement to submit a detailed research protocol to prospectively outline research activities clashes with the emergent nature of qualitative, participatory, and collaborative research [ 29 , 30 ]. The bureaucratic practices around consent that are used to operationalise the principle of autonomy are often unworkable for research with a strong relational component [ 17 , 32 – 34 ]. Additionally, research participants and co-researchers may disagree with the way the principle of participant protection is interpreted and risks and benefits are assessed by research ethics institutions [ 29 , 35 , 36 ]. These may be perceived as leaning towards paternalism, in particular in the case of populations with characteristics that are perceived as making them vulnerable [ 37 – 39 ].

If some of these features of qualitative, participatory, and collaborative research result in great scrutiny by research ethics institutions, other features with equally relevant ethical implications are not given due attention. For example, current research ethics frameworks designed to address the principle of justice (which requires the equitable distribution of both the burdens and the benefits of participation in research [ 40 ]) fail to consider how power relations between individuals or groups shape research and do not offer any mechanisms to help address the power differentials intrinsic to research [ 41 ]. Research ethics processes also have a blind spot in relation to gatekeepers, who have a substantial influence on who gets to participate and, conversely, who is excluded from research. There is no mechanism in place to oversee how they perform their role and whether they impact upon free choice of potential participants to take part in studies [ 34 ].

Alongside these issues reported for qualitative, participatory, and collaborative research that reaches the stage of seeking ethics approval, the academic debate has also aired concerns that research which is anticipated to be met with resistance by research ethics institutions is not actually pursued [ 17 , 42 , 43 ]. The perceived or expected barriers might deter researchers from conducting research on sensitive topics, involving vulnerable groups, or using more innovative methods. At best, this could contribute to homogenisation of the research landscape. At worst, it could undermine the role of qualitative, participatory, and collaborative research in promoting research inclusivity and social justice, and in answering research questions that no other research methods could address.

In order to move these debates forward, we conducted a study on research ethics aimed at generating a set of practical recommendations for improving how the research ethics system deals with participatory and collaborative research approaches (collaborative only, hereon). In this context, we used collaborative research as an umbrella term for various research approaches (e.g., participatory action research, community-based participatory research, co-creation, co-design, co-production) where participants are actively involved in shaping the research, beyond simply providing data, and where the primacy of academic knowledge is challenged by other types of knowledge (e.g., based on lived experience).

The study was organised in five consecutive phases. In the first phase, we carried out an analysis of UK research ethics policies, which informed a scoping review of the literature (phase 2). We then held an exploratory focus group with academic researchers in this field to understand their perspectives on the topic (phase 3). Results of these three phases informed a two-round Delphi study, involving academic researchers with experience of conducting participatory and collaborative research involving vulnerable groups in England (UK). The Delphi study aimed to generate consensus on what changes to the research ethics system should be considered to improve the ethics oversight of collaborative research (phase 4). A final focus group with experts was organised to inform the practical recommendations and explore their expected benefit (phase 5). This article reports the results of the first three phases of the work, whilst the remaining phases are reported elsewhere [ 44 ].

Through the analysis of policies (phase 1), we aimed to (i) understand what the UK research ethics system is intended to achieve and how it is designed to work, (ii) identify its underpinning principles, and (iii) map the operational processes and procedures which are designed and implemented to achieve the principles.

Since our work was carried out in the context of a UK-based study, the focus of the analysis was limited to UK research ethics policies, which reflect relevant domestic legislation (as set out in Appendix 2 of the UK Policy Framework for Health and Social Care Research [ 7 ],), but also draw on international standards, governance mechanisms, and good research practice (as per [ 7 ], para 3.4). By design, such policies have a deliberate wide scope: they do not, and possibly cannot, exhaustively compile principles, requirements, and standards that may be relevant for specific types of research, which are left to organisations with responsibilities under the national policy framework. In this sense, the UK system largely shares the bedrock of research ethics principles with other countries [ 45 – 48 ] and can be considered an example of a modern research ethics system. The analysis of policies was also instrumental to the development of the analytical framework of ‘Principles’ and ‘Processes’ that supported the scoping review of the literature that followed (phase 2).

The aim of the review was two-fold. Firstly, we aimed to understand how the normative principles and operational processes of research ethics play out in actual research that adopts participatory or collaborative approaches, often using qualitative methods, in the health and social care field. Secondly, we set out to map the recommendations that the literature had suggested to improve how the research ethics system deals with this type of research. The scoping review approach was deemed fit for the purpose of efficiently gathering and examining the extent, range, and nature of the literature available on this topic.

In phase 3, the exploratory focus group aimed to bring to light actual experiences of navigating the research ethics system from the perspective of active academic researchers with experience of conducting collaborative research in England (UK). By gathering their experiences, we were able to identify current patterns in the English context and to read them against the background of the literature review.

Analysis of UK research ethics policies

The analysis focused on the UK Policy Framework for Health and Social Care Research [ 7 ] and on UK Health Research Authority (HRA) policies publicly available online [ 49 , 50 ]. Policy documents were analysed thematically. The analysis proceeded deductively at first, with themes identified from the research ethics principles stated in the UK Policy Framework for Health and Social Care Research. The initial codebook was then expanded inductively, to include additional themes that were not codified as principles in the UK Policy Framework, but that appeared relevant. To help systematise the data collected, we divided the material under each theme into two categories: ‘Principles’ for data that referred to underpinning principles of the UK research ethics system, and ‘Processes’ for data describing the operational processes and procedures supporting the implementation of the principle ( Table 1 ). The Authors worked collaboratively: CDP started the data extraction and discussed the emerging results with JO as the analysis progressed. Instances of uncertainty or ambiguity were resolved through ongoing discussion.

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https://doi.org/10.1371/journal.pone.0296223.t001

Scoping review of the literature

The scoping review was conducted following the Arksey and O’Malley framework [ 51 ] and is reported based on the PRISMA extension for scoping reviews (PRISMA-ScR) [ 52 ]. The review was guided by the following questions: How does the current research ethics system work for collaborative research in health and social care? What are the challenges that the current research ethics framework poses to collaborative research in health and social care? What options have been discussed in the literature to overcome these challenges?

Eligibility criteria.

Articles examining the research ethics and governance systems in the context of collaborative research in the field of health and social care were included. They had to be written in English and published in peer-reviewed journals in the period January 2010-May 2020. The original search was updated in December 2022, to identify articles published between June 2020-December 2022. Three online databases (Web of Science, PubMed/Medline, PsycInfo) were searched in June 2020, using search strings available in S1 File . In December 2022, we re-ran the original search using the same online databases and the same search criteria. Retrieved studies were imported into a reference management software. After removing duplicates, titles, and abstracts of the retrieved results were screened by CDP for eligibility against the inclusion criteria. Full text of all possible eligible articles was retrieved and screened by CDP, with JO screening the articles for which eligibility was uncertain.

Data extraction and analysis.

Data extraction and analysis was conducted by CDP and iteratively discussed and reviewed by JO. The analysis was supported by an analytic framework organised around the themes identified in the analysis of policy documents. At the level of each theme, the analytical framework was organised as a 2X2 matrix. On the first dimension we placed the categories of ‘Principles’ and ‘Processes’, consistently with the way we had analysed the policy documents. On the second dimension, we used the categories of ‘Current system’ and ‘Options for improvement’ ( Table 2 ), to map the debate in relation to how the current research systems deal with collaborative research and to collect suggestions put forward to ensure a better fit of research ethics in the context of collaborative research. The resulting analytic framework was applied to each article. Each article was also charted in relation to its typology, country in which the research was conducted, research approach, and research population(s).

https://doi.org/10.1371/journal.pone.0296223.t002

As recommended by methodological guidance on scoping reviews [ 51 , 53 ], this analytical process allowed us to describe the literature available in this field. It also allowed us to systematically document how the set of a priori themes, derived from the policy documents, had been discussed in the literature. Lastly, it enabled us to identify, in relation to each theme, how the system currently works and opportunities for improvement.

Exploratory focus group.

Following approval by the London School of Economics and Political Science, as per the School’s research ethics policy, the exploratory focus group was conducted online, via Zoom, in May 2020 to discuss actual experiences of navigating the English research ethics system in the context collaborative research in the health and social care field. The emphasis in recruitment of participants was on identifying active researchers with relevant experience of undertaking collaborative research in health and social care, and therefore of having applied for ethical review in England (UK).

Twelve participants were identified or snowballed via the professional networks of the research team and invited by e-mail to take part. Ten academic researchers with different levels of relevant experience, some undertaking research involving populations deemed vulnerable, expressed interest and were sent background information about the study and what their participation would entail. All gave written consent to take part in the study ( Table 3 ).

https://doi.org/10.1371/journal.pone.0296223.t003

The group was facilitated by JO with assistance from CDP, both with similar research interests and experience. The discussion was audio-recorded with consent from participants.

The discussion lasted about two hours and was guided by two broad questions. We started off by asking participants about issues they had encountered in obtaining research governance and ethics approval for studies using collaborative approaches and involving groups deemed vulnerable. The second question invited participants to consider what changes could ensure that research governance and ethics approval processes were better suited for collaborative research with vulnerable groups.

The focus group was transcribed verbatim. Data were imported to Nvivo12 and analysed thematically using a deductive approach supported by the analytical framework developed for the study [ 54 ] ( Table 2 ).

The analysis of the UK Policy Framework [ 7 ] and HRA documents [ 49 , 50 ] resulted in 12 themes ( Table 4 ).

https://doi.org/10.1371/journal.pone.0296223.t004

Theme 1—General ethical principles is a general theme which reflected Principle 3 (Scientific and Ethical Conduct Research) of the UK Policy Framework, by which research projects are expected to be scientifically sound and guided by ethical principles in all their aspects [ 7 ].

We identified both principles and processes for three of the 11 remaining themes: Theme 3—Protection of research participants corresponds to Principle 8 (Benefits and risks) of the UK Policy Framework. The corresponding operational process revolves around the role of Research Ethics Committees (RECs, known as Institutional Review Boards (IRBs) in the US and Canada) to ensure that the rights, safety, dignity, and wellbeing of research participants are adequately protected [ 49 ]. Theme 6—The working of RECs reflects Principle 9 (Approval) of the UK Policy Framework. Operationally, this principle relies on Research Ethics Committees (RECs) providing ethical review of new applications and keeping approved applications under review [ 49 ]. The HRA Standard Operating Procedures for RECs make specific provision regarding the review process (e.g., ‘flagged’ RECs, Proportionate Review Service, expedited review) for different types of research [ 50 ]. Theme 7—The research protocol is equivalent to the Principle 6 (Protocol) of the UK Policy Framework. From an operational perspective, this translates into a requirement to submit the standard protocol for any new research study and a standard Notice of Substantial Amendment when significant changes to the original study are proposed [ 50 ].

The remaining eight themes substantially mirrored principles of the UK Policy Framework, but no corresponding operational process could be identified.

The search conducted in June 2020 yielded 230 references, of which 166 were unique records. After screening titles and abstracts, 109 articles were excluded. The full texts of the remaining 57 papers were retrieved and reviewed. A total of 30 articles were deemed relevant for inclusion. The December 2022 update search identified 23 further references, of which 10 were unique records. After screening titles and abstracts, eight articles were excluded. The full texts of the two remaining papers were retrieved and assessed, and one was included. Combining the two searches, a total of 31 articles were deemed relevant for inclusion in the review ( Table 5 ). The screening process is illustrated in Fig 1 .

https://doi.org/10.1371/journal.pone.0296223.g001

https://doi.org/10.1371/journal.pone.0296223.t005

Seven articles reported research based in Canada [ 28 , 30 , 56 , 61 – 63 , 75 ], seven reported research based in the USA [ 38 , 57 , 60 , 67 , 68 , 73 , 77 ], four in England or the UK [ 35 , 55 , 76 , 78 ], two in Scandinavian countries [ 32 , 71 ], one in Malta [ 69 ], and one in Australia [ 64 ]. Four referred to multiple countries (e.g., low and middle income countries [ 72 ], Ireland and the UK [ 59 ]). Of these, two did not specify the geographical setting in full [ 34 , 58 ]. Five articles did not provide any reference to the geographical setting of their work [ 29 , 65 , 66 , 70 , 74 ].

In terms of research design, 15 articles adopted a single or multiple case study design [ 32 , 34 , 71 , 75 – 78 , 35 , 55 , 56 , 58 , 61 , 64 , 67 , 69 ]. The majority of these presented recommendations for policy and research practice derived from the authors’ experiences of research ethics-related issues they had faced and navigated in their own studies. Six articles were commentaries offering critical reflections on research ethics, without reference to a specific empirical study [ 29 , 30 , 60 , 66 , 68 , 72 ]. Four articles reported on empirical studies that generated primary data: Guta et al’s work discussed the results of a content analysis of ethics review documentation submitted to Research Ethics Boards (REBs) [ 62 ], complemented by a qualitative study based on interviews with REC members, staff, and other key informants [ 28 , 63 ], whereas Shore et al’s article reported the results of a survey of community-engaged research studies reviewed by RECs [ 73 ].

Of the remaining articles, two were methodological and discussed research ethics implications of Community-based participatory research [ 57 ] and Participatory Action Research [ 67 ]. A further two were theoretical in nature: Ross et al presented a research ethics framework to support Community Engaged Research [ 38 ]; Lange et al [ 65 ] discussed the concept of vulnerability and its implications for research ethics. The remaining two were literature reviews. Doyle et al provided a synthesis of the literature that supported the design of a framework to aid the research ethics approval process by RECs [ 59 ]. Tamariz and colleagues’ systematic review identified the most common perceived barriers and facilitators to evaluating research ethics oversight for Community based participatory research [ 74 ].

Research methodologies underpinning the reviewed articles were wide-ranging. Some articles referred to participatory or collaborative research [ 32 , 35 , 72 ] or community engaged research [ 38 , 66 , 73 ] as loosely defined umbrella terms, or emphasised the use of qualitative research methods [ 30 , 34 , 59 , 64 , 68 – 70 , 75 , 76 ]. Other articles were grounded in specific definitions and epistemological traditions, such as Community-based participatory research [ 28 , 57 , 62 , 63 , 67 , 71 , 74 , 77 ] or Participatory Action Research [ 56 , 61 , 78 ]. One article positioned co-design as a collaborative approach to implementation research [ 29 ], one focused on collaborative approaches in quality improvement [ 60 ], and one referred to co-production in the context of participatory organisational research [ 55 ].

Study populations could be classified into two broad groups. About a third of the articles did not describe or provide a definition of their study population [ 28 , 29 , 74 , 30 , 34 , 38 , 57 , 60 , 62 , 63 , 73 ]. Such articles typically focused on a specific methodological approach and discussed its implications for research ethics, regardless of the study population or research setting. Of the remaining studies, three focused on vulnerable individuals broadly defined [ 34 , 65 , 68 ] and the others focused on specific populations deemed vulnerable. In these articles, vulnerability was defined according to demographic characteristics such as age (e.g., young [ 56 , 78 ] or older people [ 55 ]), illness (e.g., mental health problems [ 35 , 70 , 72 ], palliative care patients [ 76 ], people living with HIV/AIDS [ 66 ]) or disability [ 61 ], socio-economic deprivation [ 77 ], geography [ 71 ]. In other cases, vulnerability was framed as situational, being defined by individual circumstances at a specific point in time. These included grandparent caregivers [ 67 ], Lesbian, Gay, Bisexual, Transgender, Queer (LGBTQ) former foster youth [ 67 ], participants from small connected communities, which may pose challenges to the anonymity and confidentiality of research participants [ 58 , 69 ], or people diagnosed with a long-term condition who may move through vulnerable moments in their illness trajectory (such as rheumatoid arthritis [ 75 ]), and clinical staff and patients who had been involved in clinical incidents which made them temporarily vulnerable [ 64 ].

We found wide variation in the level of coverage of the twelve analytical themes ( Table 6 ). A few themes have been sparsely discussed. The theme on compliance with legislation was touched on only by one article. This highlighted the possible tension in decision-making processes about research ethics when pieces of relevant legislation or regulation are broad in scope and require (or allow) some degree of interpretation [ 77 ]. The theme on integrity, quality and transparency of research was discussed only by Øye and colleagues in two different but related articles. In the first, they discussed how gatekeepers may influence the way in which the recruitment of participants is carried out and reported [ 34 ]. In the second, they questioned the principle of scientific integrity and research independence in the context of collaborative research, when stakeholder groups with different interests and agendas, necessarily negotiate research plans and the reporting of research results [ 32 ]. The theme of accessible findings was discussed in two articles, suggesting ways in which RECs could support wider dissemination of research, beyond academic circles [ 57 , 62 ].

https://doi.org/10.1371/journal.pone.0296223.t006

Other themes have been explored more widely, often using the experiences, positive or negative, of their authors as a starting point to discuss how the ethics system currently handles collaborative research, to highlight good practices and identify recommendations for improvement. Several articles highlighted that the biomedical and technocratic approach of research ethics processes and the way in which RECs work are poorly aligned to collaborative research, its relational nature, emergent designs, inclusive approach, and do not allow the flexibility and ongoing adaptations that such research requires [ 28 , 29 ].

The literature has discussed the tension between the involvement of patients, service users, and the public in research–a key feature of collaborative research–and the protection of research participants–a primary concern of research ethics. Although the need for appropriate participant protection was consistently recognised [ 34 , 75 , 76 ], some authors highlighted that, at times, RECs showed an over-protective attitude towards participants, which ultimately could affect agency of individuals and their participation and inclusion in research [ 38 , 61 , 65 , 68 , 72 ]. Therefore, they argued for an overhaul of the way risks and benefits associated with qualitative and collaborative research are framed and assessed, considering that risks are often low (and lower than for biomedical research), whilst benefits from participation are apparent and should not be dismissed [ 38 , 57 , 59 , 60 , 73 , 76 , 78 ]. Moreover, they highlighted that, given the nature of collaborative research, benefits and risks can unfold both at the individual and at the community level and should be assessed accordingly [ 29 ].

Consent-seeking practices can be seen as an example of how research ethics principles are operationalised in the context of collaborative research [ 35 ]. The suitability and appropriateness of traditional consent-seeking procedures, by which participants are requested to give one-off consent in writing, were questioned with specific reference to collaborative research [ 55 , 57 ]. Similarly, traditional research ethics systems were perceived as being uneasy about co-researchers identified from groups labelled or potentially perceived as vulnerable [ 32 , 67 , 78 ].

The role of the researcher and the nature of the research protocol were also recurring themes. Some authors contended that the role of the researcher is relational and constructed continuously on the spot [ 34 ]. They argued that researcher’s skills and experience in attending to ethical relationships with participants and in self-reflection should be integrated into research ethics frameworks [ 72 , 75 ] and considered when defining acceptable levels of risk tolerance [ 59 ].

Several authors commented on the constraints of the biomedical framework that underpins the research protocols required by RECs [ 62 , 74 ]. Standard protocols do not fully allow articulation of the relational nature of collaborative research (e.g., to define the nature of the relationships across participants, co-researchers, and researchers, and establish how their power differentials will be addressed [ 61 ]). They also fail to accommodate its emergent and iterative nature, e.g., when initial research results inform subsequent data gathering and methodological choices [ 64 ], and those layers of everyday ethics which are intrinsic to collaborative research [ 35 ].

Privacy and confidentiality are further themes which have been covered in the literature. The blanket approach to anonymity as the bedrock of confidentiality and privacy was disputed: whilst for some research participants this may be appropriate (e.g., in small connected communities [ 58 , 69 ]), for others, protection of anonymity should be flexed to reflect participants’ preferences (e.g., in the case of young participants, who may perceive the requirement of anonymity as unjust and discriminatory when based on age [ 78 ]). Researchers argued that concepts of privacy and confidentiality are context-specific and culturally-constructed, and research ethics practices should be tailored accordingly.

The literature review highlighted two themes not included in the initial thematic framework. The first was the membership of RECs [ 28 , 29 , 32 , 56 , 57 , 60 , 62 , 74 ]: a recurrent perception was that experience and expertise of qualitative and collaborative research among REC members is minimal, affecting how applications are reviewed and approved. To overcome this, some authors recommend establishing special RECs for collaborative research.

Training was a further additional theme. The literature highlighted the need for REC members to receive training in the full range of research methods and study designs and also recommended that researchers, co-researchers, and gatekeepers engaged in collaborative research should be offered an opportunity to gain a deeper understanding of research ethics, REC culture, and processes [ 29 , 32 , 56 , 57 , 60 , 62 , 74 ].

Exploratory focus group

The analysis of the focus group data identified 9 of the twelve themes of the analytical framework ( Table 7 ).

https://doi.org/10.1371/journal.pone.0296223.t007

At a general level, participants described obtaining ethics approval as a bureaucratic hurdle, particularly burdensome for research involving groups deemed vulnerable by research ethics committees

“I feel the burden of newly found bureaucracy . As we were going through the procedures to prepare for our project , that involved people with dementia , one of the questions that emerged was how much more paperwork will it entail to involve them . Maybe it’s a bit trite , but there was a consideration of how can we involve this group less , so the burden on getting ethics is smaller .” (FG1-4)

They also talked about the poor fit between their research and the underpinnings, practices, and language of the research ethics framework within which they were expected to operate. Participants highlighted how the research ethics approval process posed great emphasis on the approval phase of a study, when the study is appraised prospectively, with less relevance given to the actual conduct of research

“One of the things that I found problematic is the extent to which the whole process is front-loaded . Ethics committees will be very paternalistic in the initial stages of giving approval to a piece of research , but then don’t seem to particularly be interested in monitoring the conduct of the research .” (FG1-3)

In relation to Theme 2—Patient, service user, and public involvement, participants highlighted that there could be scope to engage the public and ask what ethical research means to them

“Some of those concepts [about research ethics] haven’t really been aired , in terms of public contribution and what the public would say are important concepts when we think about ethics . There’s something about unravelling some of those concepts and saying , are they the right ones actually now ? Are they fit for purpose ? (…) And as soon as you start talking about the public , their view of what is ethical conduct around involvement or around research can feel different .” (FG1-6)

In relation to Theme 3—Protection of research participants, the group highlighted the protectionist approach that RECs seem to take towards research participants. They underscored the lack of a proportionality in the way risks and benefits are assessed, at times catastrophising the worst scenarios and discounting (or ignoring) possible benefits of research participation

“What’s interesting about it is (…) the very high level of paternalism that is triggered when you’re trying to organize consent process in a research context (…) which sits rather awkwardly with the idea of empowering members of the public , patients , participants in research , to make their own judgments about their involvement . And here we’re really only talking about studies which involve interviews and questionnaires from highly experienced researchers .” (FG1-5)

In their view, this approach was inconsistent with the ongoing discourse around involvement in health and social care research. In particular, they unravelled the tension between the involvement of groups who are seldom heard in research and the perceptions that RECs may have of these groups (such as homeless people as discussed in the extract below)

“People around the [research ethics] system have a particular view of what homeless people are like , and they’re all horribly vulnerable and we should never approach them . And often they’re not . They have quite a high degree of agency .” (FG1-8)

Alongside highlighting the need to shift towards a more proportionate, risk-based approach to research ethics oversight, participants also underscored the need to design processes better suited to ensure participant protection

“Ethical processes are very important , to make sure that we’re protecting the participants , and they are necessary . It’s just how we implement them in a way that’s most appropriate and acceptable and feasible for the people who are completing them …” (FG1-9)

In relation to Theme 5—Role and competence of researchers, in the experience of participants, the research ethics system seemed to be concerned with protecting participants from possible unethical behaviour of researchers, whose ethos and competencies are undervalued

“I feel sometimes as if I’m a delinquent , who hasn’t yet been found out . The system is geared to treat me as if I’m fundamentally likely to be irresponsible in my dealings with people who are involved in research with me . My experience is that researchers , if anything , are very cautious and careful and thoughtful about the way they engage in this kind of activity .” (FG1-5)

Participants also discussed how the research ethics system is ambivalent in the way the idea of trust towards researchers is framed. On the one hand, the system seems to rely on a front-loaded process that aims to pre-empt ethical issues at the outset of a study and to foresee procedures to mitigate potential issues. On the other, when in the field, researchers operate with substantial degrees of freedom

“Once you get through , there is quite a lot of trust . All the day-to-day ethical decisions we make as researchers… we’re being trusted on those .” (FG1-10)

The group agreed that research ethics policies and institutions should move away from research ethics pivoted around the written word and accept the relational and situated dimension of research ethics

“(Any changes) should be on the basis of trying to introduce more trust into the system . The trustees seem to rely so much on the paperwork rather than on the people with the people , and the trust and responsibilities that people have .” (FG1-8)

Related to Theme 6—The working of RECs, participants described the interactions between research teams and RECs, at times perceived as confrontational and transactional

“It took three iterations of the REC meeting to be able to get approval in the end to involve people who lacked capacity in the research , and then it was at the expense of having to make other concessions .” (FG1-3)

They also highlighted how the review process of research aiming to involve groups deemed vulnerable was in their experience more burdensome than for other populations

“We did eventually get approval for that (i . e ., a study that included people who lacked capacity) . Although it took more times going back to the committee than other projects have .” (FG1-2)

Participants could envision the research ethics approval being handled in a more relational way and as a two-way process, by which RECs and researchers could identify, discuss, and address ethical matters together as the study unfolds. This shift could be beneficial in particular for research with an emergent design, given the expectation that amendments of the research protocol would be required as the research process progresses

“I wish that the whole process could be more collegiate in the way that it’s carried out . That it could be more like a process of mentoring throughout the whole research process , than having to pass an exam at the beginning of it .” (FG1-3)

Participants discussed options to mitigate the uneasiness of some RECs in dealing with collaborative research approaches, specific topics, and research groups that could be perceived as vulnerable

“I wonder if it’s possible to have RECs that are more topic-specific . Or since there are specific consideration for working with vulnerable populations , can there be one or two RECs that specialize on this particular concern ? And they apply the principles in a consistent way across the country .” (FG1-1)

Participants reported several issues in relation to Theme 7—The research protocol. The current protocol template was described as unfit for use in the context of collaborative research using emergent designs

“You find you have to fit your project into a particular kind of language and forms and structure in order to get through .” (FG1-10)

Researchers found the information sheets that they were required to use when recruiting study participants particularly problematic. They felt that these documents looked officious and were hard for the lay public to understand, seemingly protecting the institutions sponsoring the study rather than the participants themselves. Participants suggested that documents supporting participant recruitment could be simplified in many ways

“Information sheets that it’s in one to two pages maximum in decent size font , without all of the sort of legal clauses that are really complicated to understand . (…) I’d really like to see it literally in very easy , accessible everyday language .” (FG1-9)

Relatedly, participants also highlighted that in their experience consent-seeking was operationalised in standardised, one-off procedures heavily reliant on the written word (e.g., completing and signing a consent form) rather than as a relational, continuous process. They also raised issues about how the Mental Capacity Act (MCA) is interpreted by RECs. This resulted in limiting the opportunities for individuals with fluctuating capacity and declining cognitive function to take part in research, or in resorting to secondary consent, in contradiction with the discourse around empowerment, or in research lacking real-world relevance

“During the XX research study , I was put under pressure by a REC to only recruit people who had capacity , even though there would have been a small minority of the people living in that care environment , on the basis that Sections 30–33 of the Mental Capacity Act [which relate to research with people who may lack capacity in England and Wales] say that you can include people who lack capacity only if it’s not possible to answer your research question by including people who do have capacity . And I was told by the Chair of that REC that the representativeness of the research was not an issue , as far as they were concerned . It didn’t matter if the participants who were actually recruited represented the people living in that care environment or not , because they were going by the letter of the Mental Capacity Act .” (FG1-3)

Lastly, they underscored the burden posed to research by current legislation (or its interpretation by RECs, as illustrated by the extract above on the MCA) and how the legal requirements were embedded in the documentation used for research purposes (e.g., to comply with legislation on privacy and confidentiality) (Theme 9 –Compliance with legislation).

No data were collected in relation to themes 4, 11, and 12. One additional theme on local research governance arrangements when carrying out research involving statutory organisations (e.g., NHS hospital trusts) was identified

“The local R&D governance processes raise many of the same issues (…) . The system , certainly at the local level , is still really organized as if everyone’s doing a clinical trial ” (FG1-5)

This article provides an overview of the literature on research ethics in the context of collaborative health and social care research and complements it with the perspectives of active academic researchers with experience of navigating the English research ethics system.

The thematic framework that supported the scoping review and the analysis of the focus group data was organised around the normative principles and operational processes identified with the analysis of UK research ethics policies.

In taking this approach, this work focuses on research ethics as a function of the apparatus of research governance (i.e., the broad range of regulations, principles, and standards of good practice in research) and moves away from previous work conflating the discussion of research ethics requirements and ethical practice in research [ 80 – 82 ].

Importantly, using an analytical framework that stems from a normative standpoint allowed comparison of how the research ethics system is expected to work vs how it works in practice, according to the literature and based on actual experiences of researchers in the field. We applied the framework to the literature identified with the scoping review and updated and improved on a previous review assessing the literature published between 1990 and 2002 against the ethical principles outlined in the Belmont Report (i.e., autonomy, beneficence, and justice) [ 83 ]. We then used the framework to analyse focus group data, generating original empirical evidence about how the research ethics system is currently experienced by active researchers undertaking collaborative research in England.

Our review shows that the literature on this topic is heterogenous (e.g., in terms of language used to identify research using collaborative approaches) and broad in scope. By mapping out how key ethical principles and processes have been dealt with in the literature, it shows that the coverage received by each theme varies substantially. Despite being among the stated principles underpinning research ethics policies, themes around compliance with legislation, integrity, quality and transparency of research, and accessibility of research findings were sparsely covered in the literature. Similarly, they were not discussed by focus group participants as extensively as other topics. Reasons for this are unclear, but it may be that these themes are perceived as peripheral to research ethics per se and are expected to be addressed at different points in the wider research systems (e.g., accessibility of research findings may be addressed prospectively at the point of research funding application and/or at the end of a study, and may be largely seen as a concern of research teams and research funders, not of RECs).

Other themes, such as the working of RECs, the research protocol, and the protection of research participants were found to have received substantial attention in the literature and resonated among focus group participants.

Through the review process, it also became apparent that two themes (‘Training on research ethics’ and ‘REC membership’) discussed in the literature were not captured by the analytical framework we developed from policy documents. The lack of consideration of these two themes seems to reflect the dominant epistemological framework underpinning research ethics policies, at least in the UK context, since international guidance addresses both [ 4 ]. In relation to training, the UK Policy Framework looks exclusively at competencies and qualifications of research teams (Principle 2 Competence [ 7 ]), echoing one of the recommendations of the Helsinki Declaration (“Medical research involving human subjects must be conducted only by individuals with the appropriate ethics and scientific education, training and qualifications” [ 3 ]), taking for granted that REC members are competent to review any type of study regardless of their actual research expertise. Policies do not address REC membership and their expertise either. Historically, this has led to co-option of members with quantitative expertise, well-aligned to the dominant epistemological framework of research ethics, with other types of expertise under-represented [ 30 ]. This issue was also pinpointed by focus group participants who aired the idea of establishing RECs with specialist interest in specific research approaches, topics, or populations.

We note that our review did not find effectiveness of research ethics as an emergent theme across the body of the literature we included. Therefore, this work does not contribute to the ongoing debate about the effectiveness of ethics processes [ 8 , 9 , 11 , 12 ].

Looking at the results across themes, principles, and processes, findings from the literature and from the focus group were highly concordant. The pattern that emerges from both the literature and the focus group converges around issues in how the research ethics system deals with collaborative research and how the research ethics system negatively affects what collaborative research is conducted, and how. On the one hand, this could represent compelling evidence that the positivist underpinnings of research ethics oversight make it unfit for the purpose of reviewing research which does not sit within a positivist paradigm. On the other hand, some of these issues have also been reported in relation to biomedical, experimental research, for example in relation to informed consent [ 84 ], risk-benefit assessments [ 85 ], and the emphasis on procedures and documents to the detriment of day-to-day conduct of research [ 86 ]. Altogether these findings provide empirical corroboration of the concept of ethics creep [ 63 ]: the regulatory structure of the ethics bureaucracy has been expanding outward (e.g., taking over research using collaborative, non-experimental approaches in the social sciences) while at the same time intensifying the regulation of practices deemed to fall within its original scope (i.e., biomedical, experimental research). Consistently with this finding, this work adds to the literature documenting burdens associated with research ethics processes [ 9 , 87 ].

Indeed, the overarching discourse that emerges from both the literature and the focus group points towards the need for an overhaul of the rule-based, procedural approach to ethics threaded throughout current regulatory policies and structures, and endorses processes of ‘micro ethics’ [ 42 ], ‘situated ethics’ [ 34 , 88 , 89 ], relational ethics [ 90 , 91 ], that place emphasis on ‘ethical mindfulness’ [ 92 ] and reflexivity [ 93 ] on the part of individual researchers.

In this vein, this work also offers a rich catalogue of options for improving how the research ethics system could deal with collaborative research. Improvements expressed at the level of principles (e.g., framing consent as an ongoing process or embedding some degree of tolerance around risk, both discussed in the literature and among focus group participants) could open a line of work for research ethics institutions interested in exploring how to translate these principles into institutional processes. Among those expressed at the level of processes, some could be considered for implementation by research ethics institutions (e.g., the creation of specialist RECs, as suggested by focus group participants), others could be used as practical recommendations and advice for researchers navigating the research ethics system.

It is important to recognise strengths and weaknesses of this work. Our analytical framework was based on the analysis of research ethics policies published by UK institutions. However, the themes themselves are consistent with international research ethics frameworks currently in use and the analytical categories of ‘Principles’ and ‘Processes’ are broad enough to ensure that the results of the review are relevant beyond the UK context.

To our knowledge, the scoping review is the first attempt to map the academic literature discussing how the research ethics system deals with collaborative research in the health and social care field. The review identified journal articles published between 2010 and 2022 and indexed in three online academic research databases. Most of the included article were published between 2010 and 2015, when collaborative research approaches became increasingly popular. The academic debate about research ethics flourished at this time [ 29 ], with researchers sharing their experience of navigating the research ethics approval process for collaborative studies and often offering guidance and advice to others with similar research interests. This may have contributed developing a community of practice comfortable with addressing the requirements of research ethics. Perhaps as a result, the scholarly interest in writing about this topic in academic outlets subsequently faded away, to be replaced by methodological and good practice guidance published in the grey literature. Although this was outside the scope of this work, we are aware that resources have been made available by organisations such as those under the WHO umbrella (e.g., [ 94 ]), national research infrastructure (e.g., [ 95 , 96 ]), University-based Research Ethics Committees, and organisations acting as research facilitators and gatekeepers (e.g., [ 97 ]).

The identification of focus group participants began from our professional networks, which may have led to a dominance of participants from certain fields (e.g., dementia care and social care research) and exclusion of others. This could have biased the nature of the discussion towards certain themes or experiences. Also, the focus group was conducted at the beginning of the COVID pandemic, which affected the recruitment of participants.

Conclusions

The need for regulation and ethics oversight of research using collaborative approaches is not questioned. It is clear, however, that the biomedical regulatory framework currently in use presents obstacles to this type of research. This work documents the wide range of issues that researchers may experience when navigating the research ethics system in relation to research adopting a collaborative approach but, more importantly, it also offers options that could help address those issues within the current framework of research ethics.

It would be unrealistic to expect that every option identified could be immediately taken up and seamlessly implemented, and will then deliver positive results. Some practical recommendations could be voluntarily adopted by research teams and RECs alike and could help streamline some elements or procedures of the research ethics system. However, other options would require formal and procedural changes in research ethics processes that should be initiated by relevant institutions. Some of these may need to be accompanied by fundamental changes in the culture that surrounds research ethics, from it being a bureaucratic, prospective, front-loaded process taking place in a confrontational environment to an opportunity to think through ethical issues throughout a study in the context of a formative and collaborative process.

We hope that this work will help move the debate onwards and contribute to an agenda for change of research ethics for collaborative research in the health and social care field, and beyond.

Supporting information

S1 file. scoping review of the literature–search strings..

https://doi.org/10.1371/journal.pone.0296223.s001

S2 File. Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist.

https://doi.org/10.1371/journal.pone.0296223.s002

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Action research in the healthcare field: a scoping review

Affiliations.

• 1 Faculty of Medicine, University of Sao Paulo, Sao Paulo, Brazil.
• 2 The Brazilian Centre for Evidence-based Healthcare: Joanna Briggs Institute Centre of Excellence.
• 3 School of Nursing, University of Sao Paulo, Sao Paulo, Brazil.
• PMID: 29634517
• DOI: 10.11124/JBISRIR-2016-003200

Objective: This scoping review aimed to explore international literature related to the application of action research in studies in the healthcare context.

Introduction: Action research is an approach that involves collaboration to develop a process through knowledge building and social change. Several viewpoints of action research have been introduced as the different traditions of developed action research. To develop a coherent process, researchers have to posit their worldviews and theoretical framework and align these with the research aims and procedures, and local transformation needs. This diversity leads to a variety of action research practices in healthcare. Particularly, in this review, we raised the need for examining participants' experiences and changes related to the action research process.

Inclusion criteria: This scoping review considered studies that included any professional healthcare provider, patient or recipient of healthcare products or services involved in action research. Studies that used the action research methodology in the healthcare context were included. All quantitative and qualitative studies were considered. The quantitative component considered experimental and epidemiological studies, whereas the qualitative component considered studies that focused on qualitative data.

Methods: A three-step search strategy was used in this review. MEDLINE, CINAHL, Web of Science, Social Sciences, ERIC, PsycINFO, Health Source, ScienceDirect, Wiley and SciELO databases were searched with no publication date limitation. Studies published in English, Portuguese and Spanish were included. The data were extracted using a charting table, which was developed to record key information from sources relevant to the review question. The findings were descriptively presented, with tables and figures to support the data when appropriate.

Results: We included 124 studies with different aims and procedures. The levels of participation ranged from no real input into or influence on the research process to democratic knowledge sharing and collective understanding. The action research processes occurred in diverse settings in the healthcare context, and participants with different objectives and demands took part in the research.From study objectives, knowledge building, and social change data, we developed three domains and categorized the studies. In general, Europe and Australia published more studies in the organizational domain and mainly had healthcare stakeholders as participants. North America published more studies in the individual domain, and Latin America, the continent with a higher percentage of publications, published studies that were more frequently related to the collective domain. Asia and Africa did not have a consistent number of publications. There was a major repercussion on the health promotion perspective in North America and Latin America.

Conclusions: There are several ways of conducting action research in healthcare that consider the researcher's aims and theoretical assumptions. Further qualitative systematic review questions may arise from the results and conclusions of this scoping review.

Publication types

• Research Support, Non-U.S. Gov't
• Community-Based Participatory Research*
• Delivery of Health Care / methods*
• Health Personnel
• Health Services Research*
• Internationality
• Social Change*

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Maximising the benefits of research: Guidance for integrated care systems

England has a vibrant research and development ecosystem, with well-developed research infrastructure and research expertise within our health and care workforce. The value of research in transforming health and care is significant; additionally, staff satisfaction, recruitment and retention is higher among staff who are involved in research. The inception of integrated care systems (ICSs) provides the opportunity for systems to embed research within health and care for the benefit of our population. Supporting this opportunity, a clear research thread runs through ICS strategies and plans, from joint strategic needs assessments and joint health and wellbeing strategies , integrated care strategies , joint forwards plans , integrated care board (ICB) annual reports and the assessment by NHS England of the discharge of duties by ICBs.

The Health and Care Act 2022 (the 2022 Act) sets new legal duties on ICBs around the facilitation and promotion of research in matters relevant to the health service, and the use in the health service of evidence obtained from research. NHS England will assess ICBs for their discharge of these duties. The ICS design framework sets the expectation that in arranging provision of health services, ICBs will facilitate their partners in the health and care system to work together, combining expertise and resources to foster and deploy research and innovations. This guidance supports ICBs in fulfilling their research duties.

ICSs are encouraged to develop a research strategy that aligns to or could be included in their integrated care strategy. This strategy will enable the unification of research across ICS partners, and be consistently embedded to:

• identify and address local research priorities and needs, and work collaboratively to address national research priorities
• improve the quality of health and care and outcomes for all through the evidence generated by research
• increase the quality, quantity and breadth of research undertaken locally
• extend and expand research in settings such as primary care, community care, mental health services, public health and social care
• drive the use of research evidence for quality improvement and evidence-based practice
• influence the national research agenda to better meet local priorities and needs
• improve co-ordination and standardisation within and between localities for the set up and delivery of research
• harness the patient and economic benefits of commercial contract research
• co-ordinate and develop the research workforce across all settings.

1. Introduction

This guidance sets out what good research practice looks like. It supports integrated care systems (ICSs) to maximise the value of their duties around research for the benefit of their population’s health and care and, through co-ordination across ICSs, for national and international impact. It supports integrated care boards (ICBs), integrated care partnerships (ICPs) and their partners to develop a research strategy that aligns to or can be incorporated into their integrated care strategy, and helps them and their workforce to build on existing research initiatives and activities across health and social care to improve sector-wide performance and best practice

• explains the ICB legal duties and other requirements around research and the use of evidence from research, and that research is included in forward planning and reporting
• encourages system leaders to develop a footprint-wide research strategy that aligns to local and national research priorities, develops and supports their workforce, takes the opportunities offered by commercial research and includes plans to embed research in their system’s governance and leadership
• identifies best practice examples and other resources that ICBs may find useful as they develop their research strategies.

This guidance provides comprehensive information for use by:

• those with senior responsibility, including at board level, for research strategy development and/or operationalising research
• managers responsible for developing joint strategic needs assessments, integrated care strategies, joint health and wellbeing strategies, joint forward plans, other linked strategies, or reporting on ICB activities
• research managers
• research and development/innovation leads
• heads of services
• knowledge and library specialists.

It may also be useful to individuals involved in research, education, and partner organisations such as local authorities, social care services, the voluntary, community and social enterprise sector (VCSE) and other providers of healthcare services.

NHS England provides guidance on embedding research in the NHS and secure data environments, and the Office for Life Sciences (OLS ) champions research, innovation and the use of technology to transform health and care service. Other sources of guidance, support and information are signposted in this guidance to support ICSs in aligning to national visions, strategies and plans around research.

1.1 Definition of research

NHS England uses the UK Policy Framework for Health and Social Care Research definition of research:

“… the attempt to derive generalisable or transferable new knowledge to answer or refine relevant questions with scientifically sound methods. This excludes audits of practice and service evaluation. It includes activities that are carried out in preparation for or as a consequence of the interventional part of the research, such as screening potential participants for eligibility, obtaining participants’ consent and publishing results. It also includes non-interventional health and social care research (that is, projects that do not involve any change in standard treatment, care, or other services), projects that aim to generate hypotheses, methodological research and descriptive research”.

This broad definition encompasses the range of types of research:

• clinical trials and other clinical investigations into the safety and effectiveness of medicines, devices and health technologies
• public health research
• observational studies
• discovery science and experimental medicine
• translational research in which results from basic research are developed into results that directly benefit people
• applied research
• research to support policy-making and commissioning
• social care research and research in social care settings
• research into NHS services and care pathways.

1.2 Why research is important

The UK is a world leader for research and invention in healthcare, with around 25% of the world’s top 100 prescription medicines being discovered and developed in the UK ( The impact of collaboration: The value of UK medical research to EU science and health ). Research in the health and care system is important because it underpins all advances in health and care and is the basis for evidence-based practice. Engaging clinicians and healthcare organisations in research is associated with improvements in delivery of healthcare ( Does the engagement of clinicians and organisations in research improve healthcare performance: a three-stage review) . To benefit service users and the public, the NHS and local government, and achieve return on investment, it is vital that research is disseminated, shared and translated into practice.

The National Institute for Health and Care Research (NIHR) is funded by the Department of Health and Social Care (DHSC) to transform research in the health and social care system, including through support for NHS research. Research led to the first proven treatments for Covid, for example the use of dexamethasone, estimated to have saved over a million lives worldwide . This success was in part due to how research is undertaken in the unique environment of the NHS, innovative trial designs, the support provided by the NIHR, frontline staff enabling research, and the awareness and readiness of the public to support research. We need to learn from these and other successes, and translate this across all health and care settings. ICSs will play a vital role in enabling research to be embedded in evolving patient pathways across their footprints.

Example: PRINCIPLE trial – finding treatments for Covid recovery at home

The Platform Randomised Trial of Treatment in the Community for Epidemic and Pandemic Illnesses (PRINCIPLE) was a UK-wide, clinical study to find Covid treatments for recovery at home without the need to attend hospital. The study was open to all with ongoing Covid symptoms, registration was easy, and the trial was run entirely remotely by delivering ‘participant packs’ to people’s homes. It was one of the first trials in the world to show that azithromycin and doxycycline did not benefit patients with Covid and to identify the effectiveness of a commonly used drug – inhaled budesonide –in reducing time to recovery.

The PRINCIPLE study team demonstrated the integral role that primary, secondary and ambulatory care staff can play in the delivery of studies. Local collaborators were trained in good clinical practice to allow them to assess and confirm the eligibility of potential participants, and were commended specifically for their use of patient data to contact people soon after they received a positive test result. It is this network of local staff contributing to research within their healthcare setting that has enabled over 10,000 people to be recruited onto this study so far – one of the largest at home Covid treatment studies worldwide.

This is an example of a study design that incorporates the vital contributions of healthcare providers across the system.

Policy-makers and commissioners need evidence to support their decision-making around the delivery and system-wide transformation of health and care services, including how health inequalities will be reduced.

There is also evidence that:

• staff involved in research have greater job satisfaction and staff turnover is lower in research active trusts ( Academic factors in medical recruitment: evidence to support improvements in medical recruitment and retention by improving the academic content in medical posts)
• research active hospitals have lower mortality rates, and not just among research participants ( Research activity and the association with mortality )
• 83% of people believe that health research is very important ( Survey of the general public: attitudes towards health research)
• healthcare performance improvements have been seen from the creation of academic research placements ( Experiences of hospital allied health professionals in collaborative student research projects: a qualitative study )
• clinical academic research, and in particular the practice changes resulting from it, is associated with improved patient and carer experiences ( A qualitative systematic review and thematic synthesis exploring the impacts of clinical academic activity by healthcare professionals outside medicine ).

Key to having research embedded in health and care is having staff who can understand, undertake, use and generate new research, and share actionable research finding as part of a pro-research culture. Education and training are therefore critical for research to be sustainably embedded within health and care, and for people to develop careers in research and support it in their clinical or care roles.

DHSC, NHS England, the devolved administrations, NIHR and other partners expect to publish a clinical research workforce strategy in 2023/24 to help the UK realise the national clinical research vision outlined in Saving and Improving Lives: The Future of UK Clinical Research Delivery and deliver the Life Sciences Vision to see research embedded in the NHS as part of health and care pathways.

Research will support ICSs to deliver on their four key aims:

Improving outcomes

The NHS 2023/34 priorities and operational planning guidance emphasises the importance of research in improving patient care, outcomes and experience.

Research evidence will inform commissioning decisions to improve experience and outcomes. Research activities should align with the local health priorities identified through local joint strategic needs assessments, and may be best designed and delivered by collaborating with partners. Research priorities may be best addressed by collaborating with partners nationally to design and deliver research.

Tackling inequalities

Research can give a better understanding of local populations and the wider determinants of health, and with this the steps to maintain health and narrow health inequalities.

Enhancing productivity

The development of ICSs creates the opportunity to consider research delivery within the ICS and across ICS boundaries, increasing flexibility of workforce or recruitment while reducing bureaucracy and improving research productivity and value for money.

Supporting social and economic development

An active research ecosystem working in a co-ordinated way and to national standards brings revenue and jobs to regions. The NIHR Clinical Research Network (CRN) supports service users, the public and health and care organisations across England to participate in high-quality research. The 2019 impact and value report detailed the significant income and cost savings that commercial research generates for NHS trusts. Between 2016/17 and 2018/19 the NHS received on average £9,000 per patient recruited to a commercial clinical trial and saved over £5,800 in drug costs for each of these patients. This equates to income of £355 million and cost savings of £26.8 million in 2018/19.

In 2021 150 members of the Association of Medical Research Charities funded £1.55 billion of medical research, including the salaries of 20,000 researchers. Every £1 million spent by charities on medical research in the UK contributes £1.83 million to the economy.

Example: Research that cut problematic prescribing and generated cost savings in general practice – a local health priority

Analysis of routine patient data identified the need for strategies targeting clinicians and patients to curb rising opioid prescribing. From this, the Campaign to Reduce Opioid Prescription (CROP) was launched in 2016, urging GPs across West Yorkshire to ‘think-twice’ before prescribing opioids. This promoted the NICE guidance on chronic pain , which recommends reducing the use of opioids because there is little or no evidence that they make any difference to people’s quality of life, pain or psychological distress, but they can cause harm, including possible addiction.

Over a year 15,000 fewer people were prescribed opioids (a 5.63% relative reduction), a net saving to the NHS of £700,000. The biggest reduction was in people aged over 75, who are at higher risk of opioid-related falls and death, and there was no compensatory rise in the prescribing of other painkillers or referrals to musculoskeletal services.

The CROP campaign, led by researchers at the University of Leeds, has subsequently been rolled out across all ICBs in Yorkshire and the Humber, and the North East and North Cumbria ICB, and the 1,045 practices to which it has been delivered are reporting results similar to the above.

Foy R, Leaman B, McCrorie C, Petty D, House A, Bennett M, et al (2016) Prescribed opioids in primary care: cross-sectional and longitudinal analyses of influence of patient and practice characteristics | BMJ Open 69(5).

Alderson SL, Faragher TM, Willis TA, Carder P, Johnson S, Foy R (2021) The effects of an evidence- and theory-informed feedback intervention on opioid prescribing for non-cancer pain in primary care: A controlled interrupted time series analysis. PLOS Med .

2. ICS, ICP and ICB responsibilities and requirements

ICBs have legal duties and other requirements that relate to research. These are additional to the duties and responsibilities of individual providers within ICS footprints. This section sets out what these duties mean in practical terms and gives examples of how to meet them.

2.1 Legal duties relating to research in the Health and Care Act 2022

Part 1 of the 2022 Act includes specific legal duties for ICBs and NHS England in respect of research. In the Explanatory Notes to the 2022 Act, government sets out how ICBs could discharge their research duty.

Duty to facilitate or otherwise promote research

The ICB duty builds on the previous clinical commissioning group (CCG) duty to promote research, by requiring each ICB, in the exercise of its functions, to facilitate or otherwise promote research on matters relevant to the health service. This duty is intended to include a range of activities to enable research. Section 3 of this guidance outlines ways in which ICBs can do this.

The NHS Constitution also makes clear that patients should be enabled to take part in research: “the NHS pledges … to inform you of research studies in which you may be eligible to participate”.

The Provider Selection Regime (PSR) will be a new set of rules for arranging healthcare services in England, introduced by regulations made under the 2022 Act. The research component should be referred to once the PSR is published.

Duty to facilitate or otherwise promote the use in the health service of evidence obtained from research

This duty similarly builds on the CCG requirement to promote the use of evidence. ICBs must, in the exercise of their functions, facilitate or otherwise promote the use in the health service of evidence obtained from research. For example, ICBs should facilitate or otherwise promote the use of evidence in care, clinical and commissioning decisions.

Duty for ICSs to include research in their joint forward plans and annual reports

Joint forward plans are five-year plans developed by ICBs and their partner NHS trusts and foundation trusts. Systems are encouraged to use the joint forward plan as a shared delivery plan for the integrated care strategy and joint health and wellbeing strategy, aligned to the NHS’s universal commitments. The plan must explain how the ICB will discharge its duties around research, and the ICB must report on the discharge of its research duties in its annual report. These inclusions will raise the profile of research at board level and help embed research as a business-as-usual activity.

The joint forward plan and NHS Oversight Framework guidance set the minimum requirements for what needs to be included in plans and reports.

NHS England duty to include how each ICB is carrying out its duties relating to research in its annual performance assessment of each ICB

NHS England has a new legal duty to annually assess the performance of each ICB and publish a summary of its findings. For 2022/23 NHS England will complete a narrative assessment, identifying areas of good and/or outstanding performance, areas for improvement and any areas that are particularly challenged, drawing on national expertise as required and having regard to relevant guidance. This assessment will include a section considering how effectively the ICB has discharged its duties to facilitate or otherwise promote research and the use of evidence obtained from research.

This, alongside the implementation of the NHS Long Term Plan commitment to develop research metrics for NHS providers, will increase transparency across the system and enable more targeted support for research. Research metrics from NHS England, the Care Quality Commission (CQC) and NIHR will enable the monitoring of progress over time, and are under development with sector colleagues, including providers.

2.2 Legal requirement to work with people and communities

Working with people and communities is a requirement of ICBs, and statutory guidance is available to support them and their partner providers meet this legal duty. A co-ordinated approach across healthcare delivery and research will make it more likely that research reflects what matters to people and communities.

This will also help ICBs to fulfil their legal duty in the 2022 Act to reduce health inequalities in access to health services and the outcomes achieved. Section 3.9 includes links to resources to help guide engagement with underserved communities around research.

The Public Sector Equality Duty also applies and requires equality of opportunities between persons who share a relevant protected characteristic and persons who do not.

2.3 Research governance

While research can address local priorities, it typically operates across ICS boundaries and at national and international levels. Health and social care research is governed by a range of laws, policies, and international, national and professional standards.

The Health Research Authority (HRA ) is responsible for ensuring such regulation is co-ordinated and standardised across the UK to make it easier to do research that people can trust. The HRA is an executive non-departmental public body created by the Care Act 2014 to protect and promote the interests of patients and the public in health and social care research, including by co-ordinating and standardising the practice of research regulation. Local authorities and the NHS are obliged to have regard to its guidance on the management and conduct of research.

Before a research project can start in the NHS in England it must receive approval from the HRA. This includes research taking place in NHS trusts, NHS foundation trusts, ICBs or primary care providers of NHS commissioned services in England, and all research under an NHS duty of care, including that undertaken by NHS staff working in social care or other non-NHS environments.

The HRA schemes indemnify NHS organisations accepting these assurances against any claim covered by the NHS Litigation Authority arising as a result of incorrect assurances. If an NHS organisation duplicates the HRA assessments, it will be liable for any consequences of the decisions it bases on its own checks.

ICBs and partner organisations should have processes for the set up and delivery of research that comply with national laws and systems, and does not duplicate them. Such national systems include confirmation of capacity, National Contract Value Review (NCVR), management of Excess Treatment Costs (ETCs) and contracting arrangements (see section 2.4).

The UK Policy Framework for Health and Social Care sets out the roles and responsibilities of individuals and organisations involved in research.

2.4 Contractual requirements around research

NHS England mandates commissioner use of the NHS Standard Contract for all contracts for healthcare services other than primary care. The contract is updated annually. References to research in the current NHS Standard Contract and service conditions fall into three main areas.

Recruitment of service users and staff into approved research studies

The NHS Standard Contract obliges every provider of NHS-funded services to assist the recruitment of suitable subjects (whether patients or staff) into approved research studies. This requirement aligns to those in the 2022 Act that require ICBs to facilitate or otherwise promote research (see section 2.1). Section 3 considers how this requirement can best be met. Research involving people or their data requires ethical and potentially other approvals (see section 2.3).

National Directive on Commercial Contract Research Studies

Adherence to the National Directive is mandated as part of the NHS Standard Contract. The directive states that providers must:

• Use the unmodified model agreements for sponsor-to-site contracting; HRA and Health and Care Research Wales (HCRW) approval of studies will be dependent on use of these templates.
• Use the standard costing methodology to set prices for commercial contract research undertaken by NHS providers; this is currently in the NIHR interactive costing tool (NIHR iCT).
• Introduce the National Contract Value Review (NCVR) process in line with national rollout. NCVR is a standardised national approach to costing commercial contract research within the NHS. It currently covers acute, specialist and mental health trusts, but the intention is to roll it out to all NHS providers. The creation of ICSs is the ideal opportunity to explore how commercial study set up can be supported across these footprints, reducing the resource needed and time taken.

Comply with HRA/NIHR research reporting guidance

The provider must comply with HRA/NIHR research reporting guidance, as applicable.

2.5 Excess treatment costs

Patients in a research study may receive healthcare that differs from what is standard in the NHS, requires more clinician time or is delivered in a different location. The associated NHS treatment costs may exceed or be less than those of standard treatment. If greater, the difference is referred to as the NHS Excess Treatment Costs (ETCs).

In the case of commercial contract research, the commercial funder will pay the full cost of the study. In the case of non-commercial research, the commissioner of the service in which the study operates is responsible for funding the ETCs.

ICBs as commissioners of services are responsible for ETCs in services that they commission. Guidance for the management of ETCs is available.

DHSC and NIHR are piloting interim arrangements to support non-NHS ETCs for research in public health and social care (non-NHS intervention costs). Please refer to the further detail on the NIHR website .

2.6 Care Quality Commission

The CQC is currently developing its approach for ICS-level assessments, and its new assessment framework will be introduced towards the end of 2023 .

CQC inspection of NHS providers continue, with research assessed as part of the review of the trust-level Well-led framework. Providers are asked:

• Are divisional staff aware of research undertaken in and through the trust, how it contributes to improvement and the service level needed across departments to support it?
• How do senior leaders support internal investigators initiating and managing clinical studies?
• Does the vision and strategy incorporate plans for supporting clinical research activity as a key contributor to best patient care?
• Does the trust have clear internal reporting systems for its research range, volume, activity, safety and performance?
• How are service users and carers given the opportunity to participate in or become actively involved in clinical research studies in the trust?

3. Developing a research strategy

3.1 why develop a research strategy.

Like the health and care system, the research environment is complex. Developing a research strategy will help bring together the legal and other duties around research in a coherent way, and help the ICS understand its local research capability, workforce, activity and needs, set ambitions around research and maximise the benefits associated with commercial research. It will help demonstrate the benefit of research locally, nationally and internationally, and guide the production of clear plans.

Example: Value of research partnerships and integration with ICSs

Bristol Health Partners (BHP) Academic Health Science Centre (AHSC) has a fully integrated relationship as the new Research and Innovation Steering Group for the Bristol, North Somerset and South Gloucestershire (BNSSG) ICS, and reports directly to ICB chief executives.

The group provides the strategic direction and oversight for all research undertaken and delivered across the system. Membership includes directors of research, clinical strategy, public health, social care, senior innovation and education leaders from its core funding partners. It also includes public contributors and senior representatives from primary care, NIHR Applied Research Collaboration West, NIHR CRN West of England, West of England Academic Health Science Network (WEAHSN), Healthier Together ICS, university research institutes and People in Health West of England.

The group has reviewed ICS programmes, identified current and potential research and innovation connections, and begun to establish new connections. It has also supported work with the ICS Ageing Well programme and secured funding for innovative pilots to improve dementia care and increase physical activity for older adults.

Since 2016 BHP has directly contributed an estimated additional £1.1 million to support ICS priorities through Health Integration Team projects and other activities, and has attracted more than £33 million of external research, service redesign and infrastructure into the region.

3.2 General considerations

In developing its research strategy, the ICS may find it helpful to consider these overarching questions alongside the suggested focused content covered in the sections below:

• What do you hope to achieve within a given timeframe?
• Are all the right organisations involved in developing the research strategy?
• How will the health and care workforce be enabled to deliver the research strategy?
• How can research be embedded in existing health and care delivery and pathways?
• What mechanisms are in place to translate actionable research findings into practice and decision-making?
• What inequalities exist in different areas, communities or groups? How will you ensure planning and delivery of research aligns to CORE20plus5 priorities?
• Are you considering equality, diversity and inclusivity and the Public Sector Equality Duty in facilitating and promoting research opportunities for service users and for health and care staff?
• Is the ICS considering the opportunities of developing their commercial research portfolio?
• Is research informing or being informed by population health management?
• How will you plan and deliver research in a sustainable manner, aligning it to the Greener NHS agenda and the ICB’s duties in relation to climate change ?

Buy-in from NHS staff, patients and the public will be vital if ICBs are to discharge their research duties and deliver on their research plans. An important consideration is how to develop sustainable, routine and accessible information flows to ensure the ICB, partners, staff, patients and public can access up-to-date and appropriate information around local research activity, regional, national and international research opportunities and findings, and contact information.

3.3 Leadership and governance across the ICS

Executive leadership.

The Explanatory Notes to the 2022 Act suggest that ICBs have board-level discussions on research activity, the use of the evidence from research, the research workforce and research culture within the ICS. ICSs should refer to the NHS Leadership Competency Framework for board-level leaders at organisation and ICS level for the competencies relating to the research duties of ICSs, once published.

All ICBs are encouraged to have an executive lead responsible for fulfilling the research duties conferred by the 2022 Act. They should help give the ICB a clear understanding of research across the area, regularly reporting on progress towards agreed aims. An executive lead can take responsibility for ensuring clear research ambitions and a research strategy are developed; oversight of organisational research portfolios, diversity in research, alignment to national priorities; promotion of research skills and the need for research skills training; and succession planning.

Senior leaders could engage, consult and be supported by representatives of each registered health and social care professional group when developing strategic plans, and for oversight of training, succession planning, and equality and inclusivity. They could use the capacity and capability of the research and development leads within provider organisations, although established lead roles across social care settings are rare so extra effort may be needed to garner social care research insight.

Research steering group, board or forum

Some CCGs had research steering groups and some of these have expanded with the widening remit of ICBs. ICSs that do not have a such a group should consider adopting a model similar to one in other ICSs where research is effectively embedded in ICS governance structures.

A dedicated steering research group, board and/or forum can:

• provide dedicated time to plan, oversee and report on research
• bring a range of representatives from research infrastructure organisations, patients and the public together with representation from across the ICS, to develop a common aim and objective
• ensure board-level sight of research
• take a cross-ICS approach to research, increasing participation and diversity in research, and reducing bureaucracy.

Example: A dedicated research and innovation subgroup

East and North Hertfordshire Health Care Partnership established a formal research and innovation subgroup to support its objectives to transform services, reduce health inequalities and improve patient health and wellbeing. This subgroup is dedicated to determining and supporting local research priorities and developing an innovation agenda. With effective patient and public involvement, it is working to ensure the local population has access to more research opportunities.

Bringing together the NIHR, academia, industry and local health and care services, the subgroup develops collaborative work plans that support the design, implementation and evaluation of local transformation needs, sharing resources, staff, expertise and facilities. Its work exemplifies a sustainable approach to partnership working and supports Hertfordshire and West Essex ICS’s developing strategy.

HWE ICS Partnership Board 14 September 2021

3.4 Understanding your research activity and working with local and national research infrastructure

Research in NHS and non-NHS settings across an ICS footprint will be supported by different organisations. In some areas networks or collaboratives already exist to bring these organisations together, but in others the links are not as well formed. ICBs would benefit from having a clear map of the research infrastructure and pre-existing local or national investment into research in their area.

It may be valuable to consider:

• Who are the research leaders in your local health and care system, NIHR, higher education institutions, VCSE sector and businesses?
• Are there any pre-existing local or regional research, researcher or research engagement networks?
• What are the opportunities to inform, participate in, collaborate with or lead national and international research efforts in addition to local opportunities?

A list of organisations involved in research including NIHR-funded infrastructure and programmes is included in Annex 1 .

Much of the research undertaken in NHS and other health and care settings is funded though national calls and grants provided by funders such as NIHR, research charities , UK Research and Innovation (UKRI) , including the Medical Research Council (MRC ) and Economic and Social Research Council (ESRC) , and is aligned to national priorities. Other research may include national or international commercial or non-commercial clinical trials funders.

Partners within ICS systems can use NIHR research portfolio data to monitor and plan research activity; however, not all research is included within the NIHR’s portfolio, so this will not give a full picture of the research within the footprint. Mechanisms to map and monitor research more widely could be incorporated in ICB research strategies.

Some local needs may best be addressed through public health or social care research rather than research in primary, secondary or tertiary healthcare settings. Public health and social care research are described in Annex 2 .

Example: Mapping health and care research activity, expertise, interests and infrastructure

The Nottingham and Nottinghamshire Integrated Care System Research Partners Group meets bi-monthly and is chaired by the ICB Head of Research and Evidence. It brings together senior managers from the NHS providers, ICB, two local authorities, two universities and the NIHR CRN East Midlands, providing a forum for ICS-wide research discussions and the development of a system-wide collaborative approach to health and care research across the ICS. Among its aims, the group seeks to increase participation in research at both the organisational and population level, enable equity of access to research opportunities and generate impact on health and care pathways.

The group have mapped health and care research activity, expertise, interests and infrastructure in the constituent organisations. With this the ICS can see the research capabilities, strengths, expertise, and areas of synergy and opportunities for future collaboration that align to its needs and priorities, and also gaps for future development, recognising that organisations are at different stages of research development.

3.5 Understanding local needs

Universal NHS priorities will be reflected in local research needs, and each ICS footprint is likely to have its own specific local research needs. Joint strategic needs assessments (JSNAs) are undertaken jointly by local authorities and ICBs through health and wellbeing boards (HWBs) to identify current health and social care needs of local communities, where more information is needed to do so or to understand how best to address the need. People and communities should be directly involved in identifying local need, including by working with local charities, specific communities or groups who face inequalities in access to, experience of or outcomes from healthcare, eg to target health research at those areas and populations with greatest need.

ICPs are required to develop an integrated care strategy informed by JSNAs and the joint health and wellbeing strategy (JHWS). The integrated care strategy sets out how the assessed needs can be met through the exercise of the functions of the ICB, partner local authorities or NHS England, and is informed by research and practice-based evidence, as stated in the health and wellbeing guidance. In considering where such evidence is lacking, HWBs should identify in JSNAs those research needs that ICBs, local authorities and NHS England could meet through the exercise of their research functions.

Systems are encouraged to use their joint forward plan to develop a shared delivery plan for the Integrated Care Strategy and the JHWS that is supported by the whole system, including local authorities and VCSE partners. ICBs and trusts must also use their Joint Forward Plan to describe how the ICB will discharge its duty in respect of research.

The Explanatory Notes to the 2022 Act suggest how ICBs can discharge their duties around research. These include the articulating local research needs when assessing local needs and how they will be addressed when preparing strategies and plans, and encouraging partner organisations to play an active and collaborative role in pursuing these.

3.6 Supporting delivery of research

Once an ICS has a clear picture of its local research infrastructure it can consider how best to target and support research and the research workforce across its footprint and how research findings will be used. For this, the ICB should ensure that its approaches reflect national approaches to costing, contracting, approvals and information governance, and that they are also informed by learning from effective practices across equivalent ICBs.

As healthcare shifts into communities, ICSs should support the parallel shift in research by embedding research in health and care. Increasing access to research opportunities will give service users earlier access to new treatments, and faster research set up and delivery may provide the evidence needed to support improvements to local care sooner. Inclusive recruitment practices will be needed to ensure that all groups in society have the opportunity to help shape and take part in research, and benefit from research findings.

In developing its research strategy, an ICS has opportunities to reduce bureaucracy, and make research more efficient and effective across its own and with other ICS footprints, and across NHS and non-NHS boundaries, while meeting national regulatory guidance. ICBs will be expected to work with the HRA to co-develop, build on and implement strategies for further co-ordination and standardisation of study set-up and delivery processes. Any regional systems and processes that ICBs do establish must support consistent national practice in relation to the management and regulation of research, and should not duplicate them. The HRA will work with ICBs to address barriers to efficient and rapid study set-up, including model agreements, information governance and R&D office functions.

Other potential areas for streamlining and cross-organisational working include:

• cross-ICS research proposals to identify research needs
• research delivery – identifying how ICS-wide approaches could accelerate patient recruitment and deployment of research delivery staff
• shared data architecture, including the NHS Secure Data Environment for Research Network and its subnational secure data environments (SDEs). Subnational SDEs cover multiple ICSs to achieve access to multimodal data at a scale of approximately 5 million citizens, and over time will achieve technical and governance interoperability
• a greater focus on translation and implementation of research findings into health and care practice, supporting faster improvements
• sharing access to and funding for knowledge and library services
• shared processes and repositories for research assets.

The Explanatory Notes to the 2022 Act suggest that one way an ICB could discharge its research duty would be to have a dedicated research office or team supporting research.

3.7 Enabling cross-provider research

Health and care priorities can often only be addressed with complex, multiorganisational approaches and as such the research to inform these needs to span organisational boundaries. Organisational policies should promote cross-organisational research and dissemination of research findings, including through participation in collaborative research to address national priorities, joint staff posts, honorary contracts, and administratively easier movement of researchers between health and care organisations and other sector partners, including higher education, industry, charities and local authorities.

The HRA and ICS partners are developing national guidance to support cross-provider research.

The NIHR CRN can offer ICSs opportunities to participate in national and international research studies, including those the NIHR, industry and others commission.

3.8 Commercial research

Commercial contract research is research funded solely by industry, where NHS providers are contracted to carry out the research. Most of these research studies in the NHS are interventional clinical trials, such as the NHS-Galleri trial and Astra Zeneca’s COVID-19 vaccine development . Commercial research can give patients access to a wider range of research opportunities, earlier access to novel therapies and treatments, provide drugs free of charge to patients in trials, accelerate the development of new treatments and devices, generate income for providers, and fund NHS staff. It is vitally important for the benefit of patients, the NHS and the UK economy that we create an environment in the NHS that makes it easy and efficient for the NHS to undertake commercial research. This is particularly important when it comes to international commercial research, where companies can place their studies in a number of different countries and consideration of anticipated set up and recruitment times informs where they place trials.

Data gathered during some commercial research is specific to the study and is the property of the company, as is any Intellectual Property (IP) generated. In other cases, where the NHS contributes to the foreground IP – such as through the use of NHS data for research or where NHS expertise provides important contributions to a commercial product – it is important that the NHS shares in the value of IP generated as a consequence of its contributions.

The establishment of ICSs is an ideal opportunity for their creation of ambitions to enable, grow and benefit from commercial research. ICSs should explore how efficient commercial study set up and delivery could be streamlined across sites within their footprint, and should set ambitions around commercial research.

3.9 Involving patients, service users, carers and the public in research

In developing a research strategy ICSs should set out their approach to diverse public and patient involvement (PPI) in relation to research.

Areas where working with people and communities could add value in the context of research include:

• identification of local research needs, including through JSNAs and JHWSs
• designing research proposals in partnership with local or national experts
• raising awareness of research opportunities and recruitment of participants
• developing research outcome reports and identification of how and when participants will be able to access these
• consideration of how members of the public can access the outputs from publicly-funded research
• how volunteers should be involved and what they should be paid.

The UK Standards for Public Involvement sets out the core components of good public involvement. A guide outlining good practice in engaging underserved communities around research is available from NHS England. Resources about good practice around PPI in designing and delivering research, including around incentivisation , are also available from the HRA and NIHR .

It will be useful to link into established community involvement approaches. NIHR infrastructure organisations may have established networks of expert PPI representatives, and ICSs have extensive VCSE Alliances. A co-ordinated community engagement approach across health and care delivery and research will reduce the risk of overburdening communities with organisations wanting to work with them, and will support the identification of under-served communities.

3.10 Ensuring anyone can participate in research

Making research more visible within communities and increasing the public’s understanding of research can ensure greater diversity in research participation. Research findings will then be more generalisable to a broader range of groups or communities, or can be targeted and specific to relevant communities.

ICSs should seek mechanisms to ensure that opportunities to take part in research are available to all. They should consider encouraging patients and members of the public to register on NIHR Be Part of Research (a national registry where people can express their interest in being contacted about research that is relevant to them), widely disseminate research opportunities and make provision for inclusive access for communities to take part in research. Decentralised or virtual trials are remote access trials recruited to and delivered using electronic tools, making it easier for people to participate in some studies without needing to visit a recruiting hospital or attend appointments in person. ICBs should consider ways in which research delivery can increase access to research opportunities for people within their area. ICBs should also advise the public how they can access research outputs.

NIHR and UK Research and Innovation provide resources that help organisations address issues of equality, diversity and inclusion in research settings.

Example: RELIEVE-IBS decentralised trial

In 2020, Newcastle researchers launched RELIEVE-IBS, one of the first interventional decentralised clinical studies in the UK to trial Enterosgel, a new treatment for irritable bowel syndrome with diarrhoea (IBS-D). Decentralised trials are remote access trials that use electronic tools for trial recruitment and delivery, without the patient needing to visit a recruiting hospital site, which could be miles from their homes – a convenient option for patients with IBS-D. By running the trial remotely, researchers could reach beyond the small proportion of those with this condition who attend specialist clinics, as well as save resource for the sponsor.

Not only did this trial embrace technological developments to deliver research, but it empowered more patients to become involved regardless of where they lived. With in-depth patient input, the research team were able to shape the recruitment approach to be highly accessible to participants and were offered feedback on how to refine the trial design by the sponsors. The resulting patient-centric design ensured a good recruitment response when the trial opened.

NIHR (2020) Virtual trial recruits 67% faster led by NIHR Patient Recruitment Centre in Newcastle in collaboration with Enteromed

NIHR (2021) Pushing virtual boundaries to improve patient engagement and accessibility

NIHR (2022) RELIEVE IBS-D trial case study

3.11 Health data in research

Health data generated through care of service users in the NHS can fuel a revolution in the research and development of new diagnostics and treatments, maximising the potential to improve service user outcomes and experiences, support diversity in research, and minimise health inequalities through research. To do this, researchers need access to high quality and timely data to generate insights. The public expect data to be used legally and efficiently to conduct and support research.

National commitments around data for research can be found in Data saves lives: reshaping health and social care with data . This strategy shows how data will be used to bring benefits to all parts of health and social care. To achieve this vision, the NHS will be making a strategic move away from a system of data dissemination to one of data access when making NHS health and social care data available for research and analysis. This will be facilitated by the implementation of secure data environments (SDEs).

SDEs are data storage and access platforms with features that enable organisations to have greater control and oversight over their data. SDEs allow approved users to view and analyse data without it having to leave the environment. The SDE policy guidelines provide a clear signal to the sector that SDEs will become the default way of accessing NHS data for research.

This change is supported by major investments in digital infrastructure through the Data for Research & Development Programme, which is funding the development of national and subnational SDEs. The subnational SDEs will cover the entirety of England and individual platforms will cover several ICS.

ICBs should seek ways to promote and enable the use of these rich data sources for research and include them in their research strategy.

3.12 Using evidence for planning, commissioning and improving health and care

Evidence-based commissioning has advantages for the commissioner, workforce and service users, as it can:

• lead to innovation in service design and delivery
• enhance the quality of health and care provision
• reduce clinical variation between locations and providers
• improve equity of access to services
• improve patient and population outcomes.

As part of the commissioning process, commissioners are expected to use evidence-based clinical policies, as per the Roadmap for integrating specialised services within integrated care systems . Knowledge and library services can help source and interpret evidence.

The Provider Selection Regime will reflect the research duties of the 2022 Act and should be referred to when commissioning provider services, once it has been published.

NHS knowledge and library services provide access to evidence and support for knowledge management; they train people in searching for, handling and publishing information. The Knowledge for Healthcare strategy encourages and equips NHS knowledge and library services to support NHS organisations with the translation of knowledge for the spread and adoption of research and innovation. To fulfil their obligations under the 2022 Act, ICBs could commit to active knowledge translation.

Evidence for commissioning information is available from a number of sources:

• NHS Library and Knowledge Hub
• Health Libraries and Information Services Directory
• NICE guidance
• NIHR evidence
• NHS evidence works toolkit
• Academy of Medical Royal Colleges: Evidence-based Intervention
• A million decisions

The infographic for the role of research and evidence in commissioning also provides sources for evidence-based commissioning.

Example: Evidence mobilisation, knowledge sharing and improving outcomes

The STEMClub (Sustaining Transformation by Evidence Mobilisation) is a network in the North East and North Cumbria that brings together local policy and decision-makers with NHS knowledge and library specialists to facilitate evidence-based decision-making. The input of knowledge specialists ensures timely access to published research and provides knowledge management expertise to shape how soft intelligence is translated into knowledge assets.

As members within the STEMClub network, knowledge and library specialists are providing ongoing detailed evidence reviews and information management expertise to facilitate system-wide working , eg:

• North East North Cumbria Frailty Framework
• North East and North Cumbria Maternity Clinical Network
• a review of optimal patient transfer times in the North East and North Cumbria
• regular evidence summaries for the ICS Mental Health Evidence and Evaluation subgroup.

3.13 The health and care workforce and research

Staff involved in research have greater job satisfaction and research active trusts have lower staff turnover [3] . Clinical academic roles [7] , having research colleagues within services [8] and taking students on research placements [6] are felt to foster an increase in knowledge and skills across the wider staff workforce. The General Medical Council (GMC) and the Royal College of Physicians (RCP) and NIHR have issued position statements and recommendations around research, with additional signatories including UKRI, UKRD, the Academy of Medical Royal Colleges and the Royal College of Surgeons of England. Learning resources, including programmes for ongoing professional development of the research delivery workforce, are available through NIHR Learn.

In developing a research strategy ICSs could ensure that, as part of their people function and approach to workforce planning :

• Staff roles in leading, delivering or facilitating research and in supervising those developing research skills are recognised, supported and enabled across all staff groups and health and care settings as part of a positive research culture.
• The value of evidence is recognised, and education and training around research are facilitated. Opportunities to develop research careers or in overseeing the development of other researchers are enabled; this may include having protected time, inclusion in job plans and joint appointments across health and care providers and academic institutions.
• Ensuring that there is capacity and systems that support research through services like imaging, pathology and pharmacy, as well as finance and human resources.
• Individual organisations do not always have the necessary skills or services to support effective research and its impact, such as IP management, methodological expertise, regulatory compliance, statistical analysis, knowledge mobilisation expertise, genomics expertise, health informatics and data analytics. Mechanisms are needed to ensure that these can readily and rapidly be accessed across other health and care organisations, including from local authorities and other non-NHS care providers.

A UK Clinical Research Workforce Strategy is under development. ICSs should update their approaches to their research workforce once DHSC publishes this in 2023/24.

Example: Investing in the research workforce – developing capacity for chief investigators

Across the West Midlands NIHR CRN, an investment of approximately £750,000 to develop capacity for chief investigators returned additional research grant income of over £18 million in three years. This was achieved primarily by increasing the programme activity for consultants in areas where chief investigators were underrepresented.

The funding was provided through a competitive process and co-supported by the local NIHR CRN, with several local trusts jointly funded these scholars.

Kirk J, Willcocks J, Boyle P, Brocklehurst P, Morris K, Kearney R, et al (2022) Developing chief investigators within the NHS: the West Midlands clinical trials scholars programme. Clin Med 22(2): 149–52.

Kirk J, Reynolds F, Adey E, Boazman M, Brookes M, Brocklehurst P (2022) Developing paediatric chief investigators within the NHS: the Clinical Trials Scholars programme . Arch Dis Child Educ Pract Published online first: 22 February 2022. doi: 10.1136/archdischild-2021-322186

4. References

• Varnai P, Rentel M, Dave A, De Scalzi M, Timmerman W, Rosemberg-Mantes C, Simmonds P, Technopolis Group (2017) The impact of collaboration: The value of UK medical research to EU science and health .
• Boaz A, Hanney S, Jones T, Soper B (2015) Does the engagement of clinicians and organisations in research improve healthcare performance: a three-stage review. BMJ Open 5: e009415. doi:10.1136/ bmjopen-2015-009415 .
• Rees MR, Bracewell M (2019) Academic factors in medical recruitment: evidence to support improvements in medical recruitment and retention by improving the academic content in medical posts. Postgrad Med J 95(1124): 323-327. doi:10.1136/postgradmedj-2019-136501 .
• Ozdemir BA, Karthikesalingham A, Singha S, Poloniecki JD, Hinchliffe RJ, Thompson MM, et al (2015) Research activity and the association with mortality. PLoS ONE 10(2): doi.org/10.1371/journal.pone.0118253 .
• Hunn A (2017) Survey of the general public: attitudes towards health research . Health Research Authority.
• Angus RL, Hattingh HL, Weir KA (2022) Experiences of hospital allied health professionals in collaborative student research projects: a qualitative study. BMC Health Services Research 22(1). Available at: https://doi.org/10.1186/s12913-022-08119-7 .
• Newington L, Wells M, Adonis A, Bolten L, Bolton Saghdaoui L, Coffey M, et al (2021) A qualitative systematic review and thematic synthesis exploring the impacts of clinical academic activity by healthcare professionals outside medicine. BMC Health Serv Res 21(1). Available at: https://doi.org/10.1186/s12913-021-06354-y .
• Wenke RJ, Hickman I, Hulcombe J, Phillips R, Mickan S (2017) Allied health research positions: A qualitative evaluation of their impact. Health Res Policy Syst 15(6). Available at: https://doi.org/10.1186/s12961-016-0166-4

Annex 1 – Organisations that may be involved in regional or local research

• Clinical Research Networks (CRNs) , which will be retendered and renamed regional research delivery networks (RRDNs) from April 2024
• Applied Research Collaborations (ARCs)
• Biomedical Research Centres (BRCs)
• Experimental Cancer Medicine Centres (ECMCs) , jointly funded with Cancer Research UK
• Research Design Services (RDSs) and Clinical Trials Units (CTUs) which will be replaced by the NIHR Research Support Service from 1 October 2023
• Patient Recruitment Centres (PRCs)
• MedTech and In vitro diagnostic Co-operatives (MICs) , which will be replaced with HealthTech research centres from April 2024
• School of Public Health Research, School of Primary Care Research and School of Social Care Research
• Health Determinants Research Collaborations (HDRCs)
• Clinical Research Facilities (CRFs)
• Patient Safety Research Collaborations (PSRCs)
• Translational Research Collaborations (TRCs)
• Academic Health Science Centres (AHSCs)
• university teaching hospitals and all trusts that deliver research activity
• primary care organisations, including GP practices, that deliver research activity
• higher education institutions (HEIs)
• local authorities
• social care partners
• Local Government Association
• local and national charities that fund, collaborate in or support participation in research
• research and development offices in providers or CSUs, including primary care providers and ambulance, community and mental health trusts, and those in the VCSE sector
• UKRD members
• NHS subnational secure data environments for research
• NHS R&D Forum
• NHS Genomic Medicines Service Research Collaborative
• NHS Knowledge and Library Services
• Academic Health Science Networks (AHSNs) are often well linked with research organisations and infrastructure as part of their roles in development, adoption and spread of innovation.

Annex 2 – Public health and social care research

Public health research investigates issues that impact at a population rather than an individual level. This can be done within the NHS with system-level studies, such as secondary prevention of cardiovascular disease and examining the impact on health inequalities of changes to the NHS resource allocation formula, and outside the NHS for the wider determinants of health such as air quality, transport systems and housing. There is a substantial body of public health evidence for the clinical and cost effectiveness of prevention, health protection, health service redesign and addressing health inequalities.

Social care research aims to improve the lives of children and adults who need to draw on personal or practical care and support, and family members or other unpaid carers. It can include research around the introduction, use and impact of technologies, and changing social care interventions, policies and practice. Social care research also examines issues pertaining to the safeguarding of adults and children and workforce, commissioning of services, and questions about organisational and professional practice, including decision-making, training and the quality of care.

Publication reference: PR1662

Warwick Medical School

What is health and social care research, what happens on a research study, watch this youtube video to find out., how does research transform lives.

You can learn more about the National Institute for Health and Care Research (NIHR), the largest funder of research in the UK, here on their website. Link opens in a new window

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You can take a free online course, what is health research link opens in a new window.

Understanding health research - MRC

Research involving health and social care including research in the nhs.

The UK policy framework for health and social care research sets out the principles of good practice for research carried out in the NHS and social care across the UK (or Health and Social Care (HSC) in Northern Ireland).

If you are a student, the Health Research Authority (HRA)’s student research toolkit provides guidance on what you can and can’t do in terms of research in the NHS.

If you don’t have a clinical role within the NHS yourself, it may help you to find a local care practitioner to collaborate with you on your research.

If your research will involve NHS premises, patients or staff, you should contact the NHS as early as possible for advice. You can get advice from your local NHS research and development office, or where appropriate one of the following national research support services:

• in England the National Institute for Health and Care Research’s Clinical Research Network
• Health and Care Research Wales
• Northern Ireland’s Clinical Research Network
• NHS Research Scotland

Your local NHS research and development office or one of the national research support services can discuss the feasibility of running your research, such as:

• availability of your patient population ( NHS DigiTrials can help identify appropriate patient populations and potential trials sites in England)
• availability of any support services for your research, for example local availability of pharmacy, laboratory and radiology services. (If you are applying for pharmacy or radiology support from the NHS, then you can find further guidance on Technical Assurance )
• any costs associated with running your research in the NHS. If you are applying for funding, MRC provides guidance on NHS costs

Sponsorship and approvals

All research involving the NHS (or HSC in Northern Ireland) needs to have a sponsor. You can learn more about sponsorship in your local research office .

In addition to sponsorship, there are a number of approvals which may be needed before your research can begin. For research involving the NHS you will need ethical approval from an NHS research ethics committee and NHS or HSC research and development permission as a minimum. You may need more. Exactly what approvals you will need, and any other regulatory requirements that you will need to meet, depends on your research and what it will involve.

If you are an academic proposing to collaborate with the NHS, you may need an honorary research contract. If required, NHS research and development offices can help you get the right paperwork in place. This process can take time, so an early start is advisable. The Research Passport is implemented across the UK, to facilitate the process of applying for honorary research contracts in multiple NHS organisations.

We also provide further guidance on:

• using data about people in research
• using human samples in research
• developing healthcare products like medical devices, diagnostics, software, artificial intelligence products, clinical trials and advanced therapies

Please visit developing healthcare products if you are developing an app or other technology with a medical purpose, it may be classed as a medical device.

NHS and HSC research and development permissions

If your research involves premises, patients or staff in the NHS (or HSC in Northern Ireland) you will need appropriate NHS or HSC research and development permissions. The review process is managed slightly differently across the UK. For example, if your lead NHS site is in England or Wales you should apply for HRA approval (Health and Care Research Wales (HCRW approval) in Wales), if led from Scotland NHS research and development permission and if led from Northern Ireland HSC research and development permission .

Cross-border research is coordinated across the four nations, so if your project is led from Scotland or Northern Ireland and involves NHS sites in England or Wales, you do not need to apply separately for HRA or HCRW approval. You need only apply for NHS or HSC research and development permission in the lead nation, and once approved HRA and HCRW approval will be issued for the English or Welsh sites.

The UK local information pack is the UK-wide mechanism for setting up your research in NHS or HSC organisations.

You do not need to complete the UK local information pack for a single centre study with an NHS or HSC sponsor if that single site is an NHS or HSC organisation and it is also the sponsor of your study.

If that’s not the case, each NHS or HSC organisation needs to agree to take part in your research. They need to receive the UK local information pack to do this and confirm they have the capacity and capability to take part in your research. Responsibility for sharing the UK local information pack lies with the sponsor, but this can be delegated. You can find more details on sharing the UK local information pack on IRAS.

If your research involves the NHS, you will find further guidance on NHS and HSC research and development approval process in the Integrated Research Application System (IRAS) help pages .

Applying for approvals using IRAS

IRAS allows you to apply for a number of research approvals.

For clinical trials, the combined review service brings together review by the MHRA and NHS research ethics committee, from a new part of IRAS.

The IRAS online guide helps explain how to use IRAS. It is designed to help those applying for approvals, as well as those who review or sign off projects. If you are new to IRAS then you may find the new users information helpful.

We also provide guidance on applying for ethical approval .

Research transparency

If your research will involve people as participants you should consider how you can be transparent at all stages of the research process. You need to ask questions like:

• where you will register your study once it has been approved so everyone can see it is happening
• how your research participants will find out about the results of your research
• whether the research results will be written in a way that they can easily understand

You can learn more in the HRA’s policy on research transparency .

You will find more guidance on sharing the results of your research under ‘dissemination of findings’ in end of study and archiving .

Last updated: 16 March 2023

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How we regulate health and social care research

We are one of a number of organisations that work together in the UK to regulate and approve different aspects of health and social care research.

Most of our functions apply to research undertaken in England but we also work closely with the other countries in the UK to provide a UK-wide system.

What is health and social care research?

Health and social care research aims to find out new knowledge that could lead to changes to health treatments, policies or care. Without health and social care research, clinicians (doctors, nurses, dentists, social workers, and other health professionals) would continue to carry out their work the same way without knowing if a new treatment or approach would be more effective for the person they are supporting or treating.

How is health and social care research funded?

Research can be funded through the NHS itself (commonly through the National Institute of Health Research (NIHR)  which is the research arm of the NHS), commercial organisations (for example, drug companies), universities, research councils, health organisations and charities.

How does research get approved?

Before a research study can start; it needs to be approved first by the relevant bodies and health regulatory organisations.

Research Ethics Committees  (REC) are independent groups of people who review certain types of research to assess whether studies are ethical. The Confidentiality Advisory Group (CAG) provides advice on specific projects that will be using confidential medical information.

Our staff also assesses research in the NHS to make sure that studies comply with relevant legislation and guidelines (such as Clinical Trials Regulations, the Human Tissue Act and the Data Protection Act).

There are other specialist approvals provided by other organisations for some types of research.

Where is research carried out and by whom?

With all the relevant approvals in place, health and social care research is carried out in a number of locations including NHS hospitals, doctors/GP surgeries, dentists, care homes or residential care services with patients and service users. Some health research testing new medicines involves healthy volunteers and takes place in universities or in commercial research centres. In health and social care research, these are called the research sites.

There will be someone responsible for the overall research study called a chief investigator. Usually, this is someone who works directly with patients such as a doctor, dentist, nurse, social worker or a university researcher. The principal investigator is the person responsible for the conduct and day to day running of a study at each research site and will lead a team to carry out the research.

What is public involvement in research?

Patients, carers, service users and members of the public may undertake an advisory role working with a research team to offer valuable insight on their health condition or experiences to help with the design and set up of a research study. When patients and the public undertake this type of role or activity, it is called public involvement in research. Find out more about how we involve the public in our work,  and the benefits to involving the public in research .

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New Research in March: Colorectal Cancer, Kidney Health, OR Supply Costs, and More

March 15, 2024

CHICAGO: The March issue of the Journal of the American College of Surgeons (JACS) , which includes research presented at the Southern Surgical Association 135th Annual Meeting, features new research on topics ranging from colorectal cancer and social vulnerability to operating room supply costs, the rise in school shootings since 1970, and the impact of permitless open carry laws on suicide rates, among others.

Read highlights from the issue below. The full issue is available on the JACS website .

Social Vulnerability Index and Survivorship after Colorectal Cancer Resection

Researchers analyzed whether data from the Social Vulnerability Index (SVI) can help predict complications and survival rates for colorectal cancer (CRC) patients. A high SVI rating was independently associated with major perioperative complications and survival rates after resection of 872 CRC patients. Findings indicate the SVI may be a useful measure to determine CRC patients who may benefit from outreach interventions.

DOI: 10.1097/XCS.0000000000000961

Health Inequities in Likelihood and Time to Renal Recovery after Living Kidney Donation: Implications for Black American Kidney Health

There exists a lack of live kidney donation studies examining health inequities in renal recovery post-donation. Researchers retrospectively analyzed 100,121 living kidney donors reported to the Scientific Registry of Transplant Recipients between 1999-2021. Findings revealed:

• Black living kidney donors, especially young Black males, were less likely to recover kidney function
• Time to renal recovery for Black patients was significantly longer than their White counterparts
• Black living donors appear to have the greatest future risk of end-stage kidney disease

There is a need for enhanced living kidney donor follow-up, authors note.

DOI: 10.1097/XCS.0000000000000970

Decreased Operating Room Supply Costs and Increased Value of Care after Implementing a Sustainable Quality Intervention

Operating room costs are the second most expensive element of surgical care. To reduce costs, researchers implemented a sustainable quality improvement intervention using automated electronic health record data to analyze operating room supply cost data with patient and case characteristics and outcomes. Results show:

• A decrease in operating room supply costs
• A decrease in incidence of cases with out-of-control costs
• No difference in duration of surgery or patient outcomes
• An increase in the value of care

DOI: 10.1097/XCS.0000000000000972

Patients With Obesity and Kidney Failure May Be Newly Eligible for Kidney Transplants

A collaborative study between bariatric and transplant teams has created a viable pathway for patients with obesity who also have end-stage renal disease to become eligible for kidney transplants through weight loss surgery. Postoperative outcomes indicate significant improvements in BMI, hypertension, and diabetes management, enhancing patients’ overall health and transplant viability.

Read the press release

Study Reveals the Impact of Behavioral Health Disorders on Cancer Surgery Outcomes

One in 15 cancer patients in the Medicare system have at least one behavioral health disorder (BHD). BHDs, which include substance abuse, eating disorders, and sleep disorders, are linked to worse surgical outcomes and higher health care costs in cancer patients. Patients with BHDs are less likely to undergo surgical resection and have higher odds of postoperative complications.

Study Quantifies Dramatic Rise in School Shootings and Related Fatalities Since 1970

In the 53 years leading up to May 2022, the number of school shootings annually increased more than 12 times. The likelihood of children being school shooting victims has increased more than fourfold, and the rate of death from school shootings has risen more than sixfold. The incidents studied involved 3,083 victims, including 2,033 children ages 5-17 years, and 1,050 adults ages 18-74 years.

Permitless Open Carry Laws May Lead to More Firearm-Related Suicides

Suicide by firearm rates increased 18% in nine years in states that began allowing firearm owners to openly carry a firearm without a permit. U.S. rates of firearm-related suicide rose from 21,175 in 2013 to 26,328 in 2021, an increase that may be related to more permissive open carry laws.

Journalists should contact [email protected] to receive a full copy of any of these studies or to set up an interview with a researcher.

About the American College of Surgeons

The American College of Surgeons is a scientific and educational organization of surgeons that was founded in 1913 to raise the standards of surgical practice and improve the quality of care for all surgical patients. The College is dedicated to the ethical and competent practice of surgery. Its achievements have significantly influenced the course of scientific surgery in America and have established it as an important advocate for all surgical patients. The College has approximately 90,000 members and is the largest organization of surgeons in the world. "FACS" designates that a surgeon is a Fellow of the American College of Surgeons.

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• Email: [email protected]

News and features

University of bristol experts appointed senior investigators by national institute of health and care research.

David Abbott, Professor of Social Policy

Rebecca Kearney, Professor and Director of Bristol Trials Centre

Press release issued: 18 March 2024

Two University of Bristol academics have been awarded Senior Investigator status by the National Institute for Health and Care Research (NIHR).

The NIHR is funded by the Department of Health and Social Care to try and improve health and wealth in the UK through research.

David Abbott , Professor of Social Policy from the  School of Policy Studies and Rebecca Kearney, Professor and Director of Bristol Trials Centre in the Bristol Medical School: Population Health Sciences (PHS) , have been named as Senior Investigators by the NIHR, meaning they will help guide research capacity development and enhance the career paths of NIHR researchers.

NIHR Senior Investigators are among the most prominent and prestigious researchers funded by the NIHR and the most outstanding leaders of social care and health research within the NIHR.

Professor Abbott said: "I'm happy that this recognition shines a light on the talent and leadership in the social care research community, and look forward to supporting the NIHR Academy to nurture future generations of social care researchers."

The NIHR Academy is responsible for the development and coordination of NIHR academic training, career development and research capacity development. The academy plays a pivotal role in attracting, training and supporting talented health and care researchers to tackle the complex challenges facing the sector.

The NIHR works in partnership with the NHS, universities, local government, other research funders, patients and the public to fund, enable and deliver world-leading health and social care research that improves people's health and wellbeing, and promotes economic growth.

Full details of the 2024 NIHR Senior Investigator and Senior Investigator Emeritus appointments are available here: 43 research leaders awarded prestigious NIHR Senior Investigator award .  

Full details of all NIHR Senior Investigators are available on the  NIHR Senior Investigators Directory .

Further information

About the National Institute for Health and Care Research (NIHR) The mission of the National Institute for Health and Care Research (NIHR) is to improve the health and wealth of the nation through research. We do this by:

• Funding high quality, timely research that benefits the NHS, public health and social care;
• Investing in world-class expertise, facilities and a skilled delivery workforce to translate discoveries into improved treatments and services;
• Partnering with patients, service users, carers and communities, improving the relevance, quality and impact of our research;
• Attracting, training and supporting the best researchers to tackle complex health and social care challenges;
• Collaborating with other public funders, charities and industry to help shape a cohesive and globally competitive research system;
• Funding applied global health research and training to meet the needs of the poorest people in low- and middle-income countries.

NIHR is funded by the Department of Health and Social Care. Its work in low- and middle-income countries is principally funded through UK Aid from the UK government.

The NIHR is the research partner of the NHS, public health and social care.

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Qualitative Research and its Uses in Health Care

Although relatively uncommon in health care research, qualitative research is now receiving recognition and is increasingly used in health care research with social and cultural dimensions. Unlike quantitative research, which is deductive and tends to analyze phenomena in terms of trends and frequencies, qualitative research seeks to determine the meaning of a phenomenon through description. It aims to develop concepts that aid in the understanding of natural phenomena with emphasis on the meaning, experiences and views of the participants. Differences among qualitative researchers exist on matters of ontology, epistemology, data collection methods and methods of evaluation. The aim of this article is not to act as a practical guide on how to conduct qualitative research, but is an attempt to give an introduction to qualitative research methods and their use in health-related research.

Q ualitative research is defined as an umbrella term covering an array of interpretative techniques which seek to describe, decode, translate and otherwise come to terms with the meaning, not the frequency, of certain more or less naturally occurring phenomena in the social world. 1 , 2

As a method of inquiry, it was first used by sociologists and anthropologists in the early twentieth century, although it existed much earlier than that in its non-structural form. Researchers studied cultures and groups in their own and foreign settings and told stories of their experience long before then. In the 1920s and 1930s, social anthropologists and sociologists implemented a more focused approach compared to the old unsystematic and journalistic style used in those days. Since the 1960s, qualitative research has experienced a steady growth starting with the development of grounded theory and new publications in ethnography. 3 , 4 The number of books, articles and papers related to qualitative research has increased tremendously during the past 20 years and more researchers, including health-related professionals, have moved to a more qualitative paradigm adapting and modifying these approaches to the study needs of their own areas. 4

Since qualitative research does not aim to enumerate, it is sometimes viewed as the exact opposite to quantitative methods and the two methods are frequently presented as antagonists. Quantitative research is based on structure and uses experiments and surveys as methods. In addition, it is deductive in nature and uses statistical sampling methods. In contrast, qualitative research is described as an action research using observation and interview methods. It is inductive in nature and depends on the purposeful selection of participants. Whereas quantitative researchers use reliability as a way of verification, qualitative researchers use validity. Recently, there has been a growing recognition that the quantitative-qualitative debate and distinction is unnecessary and that it would be more fruitful for the relation between the two methods to be complementary and overlapping rather than exclusive. 6 In fact, neither qualitative nor quantitative research is superior to the other; there are weaknesses and strengths in each method. Qualitative and quantitative research methods can indeed be seen as complementary and both are necessary to provide an understanding of a phenomenon.

Several researchers have argued that the research questions and the phenomenon under investigation should determine the methodology to used. 7 , 8 , 9 The crucial question, therefore, is not “what is the best research method?” but “what is the best research method for answering this question most effectively and efficiently?” 10 So, while qualitative and quantitative research may well investigate similar topics, each will address a different type of question. Holman sums up this position: “true understanding in medicine cannot be achieved without adding qualitative methods to the research arsenal”. 11

Traditional quantitative methods, such as randomised controlled trials, are the appropriate means of testing, for example, the effect of an intervention or a treatment, while a qualitative exploration of beliefs and understandings is needed to find out why the results of research are often not implemented in clinical practice. The aim of qualitative research is to develop concepts that can help us understand social phenomena in natural settings, giving emphasis on the meanings, experiences and views of the participants. 10

Qualitative research methods are the most suitable for this approach because of their emphasis on people’s lived experience. They are considered to be well suited for locating the meanings that people place on the events, processes, and structures of their lives and their perceptions, presuppositions and assumptions. 5 In his advice to graduate students, Patton lists a number of conditions that are suitable for a qualitative study. These include: questions about people’s experiences; inquiry into the meanings people make of their experiences; studying a person in the context of her or his social/interpersonal environment and research where it is difficult to develop a standardised instrument due to the lack of knowledge on the phenomenon. 12

ARGUMENTS FOR AND AGAINST QUALITATIVE METHODS

There are major differences of opinions among qualitative researchers on matters of ontology and epistemology as well as the methods to be used and criteria of evaluation. There are also disagreements about the nature, purpose, status and practice of its methods. A large number of authors take a predominantly method-based approach; authors such as Miles and Huberman 5 and Patton 12 put emphasis on data collection techniques. Another approach is to classify qualitative research according to research traditions, i.e. whether phenomenological, grounded theory or ethnography, amongst others. Authors such as Creswel 9 and Denzin and Lincolin 3 prefer this approach, which has the advantage of being based on systematisation of knowledge providing a sense of order and orientation. On the other hand, it has the disadvantage of oversimplification, ignoring the issues of the research question and conceptual frameworks used and the way these issues can shape the research process and the findings. 13 In addition, some researchers have decided to classify qualitative research according to the research question or the method of analysis.

Although the majority of qualitative researchers stress that qualitative research is inductive in nature, in contrast to quantitative research which is deductive, there are qualitative researchers who argue that both can be used for different purposes and at different times, and that qualitative research can be done in a deductive way where prior assumptions are tested on new cases. 14 Retroduction, which is defined as the movement backward and forward between theory and data or the combination of deduction and induction, is said to be a characteristic of qualitative research. 11 The degree of deduction or induction and which one follows the other depends on the research question. 12 .

Guba and Lincoln 15 used the term “emergent design” to describe a qualitative study design that emerges as the study progresses in response to the researcher’s early observations. There are also qualitative studies in health care that base their research questions on the results of prior literature of quantitative studies on the subject. 16 , 17 While the research questions in these studies were relatively precise, the method used was flexible.

Miles and Huberman 5 state that no study conforms exactly to a standard methodology and that the researcher bends the methodology to the peculiarities of the study. According to Creswell, 9 traditions of inquiry used “need not be pure, and one might mix procedures from several”. Mixing approaches and procedures is encouraged by some authors and regarded as a creative approach to qualitative research. 12

Studies using qualitative research in health care have been criticised for the misguided separation of method from theory and of technique from the conceptual underpinnings. 18 However, qualitative health researchers respond by stating that the choice of method and how it is used can perfectly well be matched to what is being studied rather than to the methodological leanings of the researcher. 10 It has been suggested that incorporating qualitative research method experts into health research teams enriches research and ensures that the right methodology is used for answering the right questions. Finally, using qualitative methods in health-related research has resulted in more insight into health professionals’ perceptions of lay participation in care and identification of barriers to changing healthcare practice.

QUALITATIVE RESEARCH APPROACHES

Grounded theory, phenomenology and ethnography are three approaches used in qualitative research. Grounded theory approach is a commonly used qualitative method in the social sciences to inductively generate or discover a theory out of the data. 9 Phenomenology and ethnography are more commonly used qualitative approaches in health care and will be highlighted below.

PHENOMENOLOGY

One of the major strengths of qualitative research is its emphasis upon understanding the phenomenon of interest holistically and in its context. The term phenomenology is popular and widely embraced, but its meaning has become confusing and faint. Different researchers refer to phenomenology differently. It can refer to an inquiry paradigm, an interpretive theory, a philosophy, an analytical perspective, a major qualitative research tradition or a research method framework. 12

In spite of the differences, all of these approaches share the focus of phenomenology, which is exploring how human beings make sense of experience and the meaning they give to these experiences. Phenomenology is being used in the social and human sciences including sociology, education, psychology, nursing and health sciences. 9

Phenomenologists are interested in how people put together the phenomena they experience in such a way as to make sense of the world and develop a worldview. They assume commonality in human experience and focus on meaning-making as the essence of human experience. The essence is the core meaning mutually understood through a phenomenon commonly experienced. 12 The phenomenon under study may be emotions, relationships, a programme, an organisation or a culture. 12 Bracketing is one of the central ideas in phenomenology. It means that the researcher has to set aside all of his prejudgments and his previous experience about the phenomena and approach the field with an open mind, imagination and intuition. Although important, bracketing is often said to be a difficult task. 9

Patton 12 describes the difference between conducting a phenomenological study and using a phenomenological perspective to a study. He argues that, “one can employ a general phenomenological perspective to elucidate the importance of using methods that capture people’s experience of the world without conducting a phenomenological study that focuses on the essence of shared experience”.

ETHNOGRAPHY

In ethnography, the researcher studies the structure and function of a group of people. An example of a structure or configuration is the kinship, while the function refers to patterns of relationships affecting and regulating behaviour. 9 The aim of ethnographic studies is to give a holistic picture of the social group studied, attempting to describe aspects of the cultural and social system of that particular group. These aspects could be the group history, religion, economy, politics or environment.

Data collection methods vary in ethnographic studies with observation and interviews being the most popular methods. Although some authors expressed concern that anthropological methods may be misused or applied superficially by the medical profession, 19 others, however, expressed the need for acknowledging and incorporating ethnographic methods in health care research. 20 Savage 19 explains that today the term ethnography can be applied to any small-scale social research carried out in everyday settings and uses several methods evolving in design and focusing on an individual’s meanings and explanations. In health care, ethnography has been used in topics related to health beliefs and practices, allowing these issues to be viewed in the context in which they occur and therefore helping broaden the understanding of behaviours related to health and illness. 20

In addition, there has been an increase in the amount of cross-cultural research and a change in the form of this research. Recently, more short-term ethnographic and cross-cultural studies have been undertaken, for example, studies sponsored by international development agencies or student exchange projects. 12

QUALITATIVE RESEARCH INSTRUMENTS

Qualitative research instruments used for data collection include interviews, observations, and analysis of documents. Interviews are the most common techniques used to gather research information. There are three types of interviews: structured, semi-structured and unstructured, described in some books as structured, informed and guided, respectively. 13

The semi-structured interview is more commonly used in health care-related qualitative research. Such an interview is characteristically based on a flexible topic guide that provides a loose structure of open-ended questions to explore experiences and attitudes. It has the advantage of great flexibility, enabling the researcher to enter new areas and produce richer data. In addition, it helps the researcher to develop a rapport with the informants. Semi-structured interviews elicit people’s own views and descriptions and have the benefit of uncovering issues or concerns that have not been anticipated by the researcher. 6 They are commonly used when the aim is to gain information on the perspectives, understandings and meanings constructed by people regarding the events and experiences of their lives. However, this type of interviewing is claimed to reduce the researcher’s control over the interview situation and take a longer time to conduct and analyse, in addition to the difficulties of the analysis process. 21

In health care, interviews are the appropriate tool to be used if the research is concerned with interpersonal aspects of care or if the available evidence is limited. 6

Another qualitative research instrument that can be used in health care research is the focus group. Focus group interviews have the advantage of being more time efficient as more people can be interviewed for the same amount of time. They also provide a richer source of data. On the other hand, focus group interviews tend to document the ‘public’ rather than the ‘private’ views of the individuals. In addition some people do not interview well in-group situations. 13

THE USE OF THE INTERVIEW GUIDE

Some qualitative researchers are reluctant to plan a design of their study in advance of the data collection. They argue that the phenomenon studied must first be discovered and they describe their design as emergent. However, increasingly more qualitative researchers appear ready to define a research question and develop an interview guide prior to starting the data collection. 11 Patton defines an interview guide as a series of topics or broad interview questions which the researcher is free to explore and probe with the interviewee. 12 The advantage of an interview guide is that it helps the interviewer pursue the same basic lines of inquiry with each person interviewed and manage the interviews in a more systematic and comprehensive way. The findings of earlier work are increasingly being used as a facilitator for further research. However, concepts drawn from earlier work are supposed to be held lightly and to be subject to reformulation or rejection by the researcher especially as the study goes on and the research progresses. 11 The extent to which such a flexibility of design is important will vary depending on the topic and the aim of the study.

Sampling strategies in qualitative research are largely determined by the purpose of the study. Statistical representativeness is not considered as a prime requirement in qualitative research and is not normally sought. Furthermore, qualitative data collection is more time consuming and expensive, which makes the use of a probability sample impractical. 6 The aim of sampling in qualitative research is to identify specific groups of people who hold characteristics or live in circumstances relevant to the phenomena being studied. In this way, identified informants are expected to enable enriched exploration of attitudes and aspects of behaviour relevant to the research. 10 Two types of samples used in qualitative research, maximum variation and homogenous samples, are explained below.

According to Patton, 12 maximum variation sampling is where the researcher attempts to study a phenomenon by seeking out settings or persons that represent the greatest differences in that phenomenon. A maximum variation sample documents diverse variations and identifies important common patterns by representing diverse cases to develop fully multiple perspectives about the cases. 9 This means that the participants are sampled based on particular predetermined criteria in order to cover a range of constituencies, such as different age, cultural background or class. 6

Similarly, the researcher can select the setting of the data collection on the basis that it is sufficiently similar to other settings in which generalisation is sought. This way the researcher is demonstrating the possibility that the setting studied is representative of the population studied. 2

In homogeneous sampling, the researcher chooses a small homogenous sample with the purpose of describing some particular subgroups in depth. 12

The sample size in qualitative research is not determined by fixed rules, but by factors such as the depth and duration of the interview and what is feasible for a single interviewer. 22 Although it is theoretically possible to carry out qualitative research on large samples, qualitative researchers find themselves obliged by time and resource limits to trade breadth for depth. 11 The sample size for interview studies is usually much smaller than those of a quantitative research, usually not exceeding 50 participants, although this can vary with the research question asked. 6 Patton 12 states, “there are no rules for sample size in qualitative inquiry”. In other words, sample size depends on the aim of the study and what is possible, given the time and resources available.

ANALYSING QUALITATIVE RESEARCH

Although there are plenty of guidelines for analysing qualitative research, applying these guidelines requires judgment and creativity because each qualitative study is unique. 12 A researcher might also be confused by the different terms used by qualitative researchers when describing analysis. Analysis might be described as interpretation, making sense of data, or transforming data. Analysis is sometimes presented to indicate different procedures based on language, theory or what is described as interpretive/descriptive analysis. 11 However, overlap can take place between these different methods and a researcher might decide to use a method of analysis that is based on language, such as symbolic interactionist, while using grounded theory to develop a theory at the same time. Most of the analytical approaches to qualitative research in health care are ‘generic’ and are not labelled within one of the specific traditions of qualitative research. A common approach in most of these studies is general and inductive in nature, but does not comply with the very systematic and rigorous inductive approach of grounded theory. In addition, it has been described that many researchers use a simple two-level analysis scheme followed by a more specific level. This means that the researcher can initiate the analysis based on the conceptual framework used in order to produce more inductive data, and the coding moves from the descriptive to the more interpretative and inferential codes. 5

COMPUTER USE IN QUALITATIVE DATA ANALYSIS

Qualitative research studies typically produce very large amount of data that needs to be managed efficiently. Computer packages can improve the efficiency of data management. 11 Computer programs provide a way of storing and retrieving material. They are therefore useful in locating cases, statements, phrases or even words, thereby replacing the tedious and time-consuming process of “cutting and pasting” and “colour coding”. The use of computer packages, however, is claimed to distance the analyst from the data, 11 and may take the place of a close and careful analysis. Using a computer programme can lead to quantitative analysis instead of qualitative, for example, counting occurrences, giving more weight to more frequent events, and ignoring isolated incidences. 23 In addition, computer programmes are said to fix and label categories during the analysis process and the researcher may be reluctant to change these categories. 9 Furthermore, the researcher is required to learn the computer programme, which may add to the time and effort he or she will need to spend on the research project. The researcher also has to be aware of the limitations of computer programmes. While computer packages can help with the intensive process of analysis and the management of large data sets, they are not a substitute for “immersion” in the data, and thorough knowledge that can enable the researcher to make comparisons, identify patterns and develop interpretations. 6 There are different packages available: Ethnograph, Atlas and NUD.IST are the mostly used. QSR NVivo is a new product developed by the makers of NUD.IST and is user-friendlier, more suitable for individual research projects and more visually attractive than previous packages.

THE ROLE OF THE RESEARCHER IN QUALITATIVE RESEARCH

Patton 12 states that, “the human element in qualitative research is both its strength and weakness”. It is considered a point of strength because it allows human insight and experience to develop new understandings of the world, and a point of weakness because it depends heavily on the researcher’s skills, creativity, training and intellect. Qualitative methods depend on both critical and creative thinking and the balance between the two in conducting the study and interpreting its results. The role of the researcher is approached differently according to the type of research tradition used. A phenomenologist researcher is required to bracket his/her own assumptions when collecting data. On the other hand, in an ethnographic study, the effect of the researcher on the interview and the interaction is seen as inevitable and important in shaping the results of the study.

Although practising clinicians routinely interview patients during their clinical work, interviewing is a well-established technique in sociology and related disciplines. One of the differences between clinical and research-aimed interviews lies in their different purposes. The usual aim of the clinical interview is to fit the patient’s problem into the appropriate medical category for diagnosis and management. On the other hand, the aim of a qualitative research interview is to discover the interviewee’s own meaning and avoid prior assumptions and preset categories. 22 Having said that, there are general skills in clinical interviewing that can be useful, such as listening and observation. A good level of self-awareness is necessary in the researcher in order to reduce possible biases.

Researchers in qualitative research need to consider how they are perceived by interviewees and the effect of features related to the researcher, such as class, race, and sex on the interview. This question is more important if the interviewee knows that the interviewer is a doctor. It has been described that a patient, or someone who is likely to be become one, may give what he or she thinks is a desirable response, thinking that the doctor will be pleased.

RIGOUR IN QUALITATIVE RESEARCH

Health field research is generally quantitative and based on biomedical traditions and experimental methods. In this field, qualitative research is criticized for being subject to researcher bias and for lacking reproducibility and generalisability. 10 Researchers presenting their qualitative work in health-related research are partly responsible for this view. Many qualitative researchers neglect the importance of giving an adequate description of their theoretical concepts and methods used in their research. A systematic research method is also essential when conducting qualitative research. Rigour in qualitative research includes procedures taken at different stages of the research process including during data collection and analysis. Several procedures have been described to increase rigour in qualitative research. For example, triangulation is commonly used as a way of validating of data.

TRIANGULATION

In triangulation, the researcher uses multiple methods, sources, researchers or theories to provide evidence that strengthens his or her study. Triangulation provides different ways of looking at the same phenomenon and adds credibility and confidence in the conclusions drawn from the study. There are two main types of triangulation, triangulation of sources and analyst triangulation. Patton 12 defines triangulation of sources as “checking out the consistency of different data sources within the same method”. When using this type of triangulation, the researcher compares the perspectives of people from different points of view. For example, studies in programme evaluation might compare the views of staff, clients or funding bodies. 12 Studies in health care have used this method of verification to study the accounts of doctors, patients, and managers in order to identify similarities and differences in views. An example is the study of patients’ versus doctors’ agendas in general practice. 23 Both similarities and differences from different sources, when given reasonable explanation, could contribute significantly to the credibility of the findings. Triangulation with multiple analysts can also be used as a method of verification. It is defined as “having two or more persons independently analyse the same qualitative data and compare their findings”. 12

QUALITATIVE RESEARCH IN HEALTH CARE MANAGEMENT

Recently, there has been a greater acceptance of the qualitative approach, even as a stand-alone method, in health care research. Institutions that control funding for medical research have developed ethical guidelines for assessing qualitative studies which indicates formal acceptance of this form of research within an area previously dominated by quantitative methods. 13 More qualitative research articles are published in health-related journals, in addition to a new qualitative research journal (Qualitative Health Research).

Quality of health care is one of the areas where qualitative methods can be used. The concept of quality in health care is multidimensional and multifaceted and some of the questions asked related to the quality of care or services may not be acquiescent to quantitative methods. 6 Qualitative research offers a variety of methods to be used for identifying what is really important to both patients and carers. It can also be used to identify and detect obstacles to change and the reasons why improvement does not occur. 6 It is therefore an essential component of health services research because it enables us to reach areas not amenable to quantitative research, for example, lay and professional health beliefs. In addition, qualitative description can be a prerequisite of quantitative research, particularly in areas that have received little previous investigation.

Qualitative research is widely used to study issues related to doctor-patient interaction especially in general practice. Studies concerning patients’ versus doctors’ agendas in general practice and general practitioners perceptions of effective health care are examples. 23 , 24 Recently there have been more studies concentrating on patients’ own perceptions and views regarding their health and health care services, for example a study on women’s views on the impact of operative delivery in the second stage of labour. 25 Another example is the study on middle-aged person’s experience of living with severe heart failure. 26

Another area where qualitative research is being used in health care is to identify obstacles and barriers to practice change by exploring the reasons behind certain behaviours. A good example of this is the study of patients’ decisions about whether or not to take anti-hypertensive drugs. 27 There are similar studies on issues such as the use of antibiotics in general practice and patient compliance.

In addition to issues related to the patients’ perception, some qualitative studies concentrated on factors fostering the doctor’s motivation and the effect of doctors’ social life and culture, in addition to issues related to the doctor’s own health. Examples are the study by Dumelow et al. 28 on the relation between a career and family life for English hospital consultants. Another example is a study aimed at exploring general practitioners’ perceptions of the effects of their profession and training on their attitudes to illness in themselves and colleagues. 29

Qualitative work can help in identifying cultural and social factors that affect health care positively or negatively. Such information can be helpful in improving service delivery. 6 Studies on patients from ethnic minorities have identified administrative and language barriers that affected health care and shed light on some of the beliefs and behaviours of these patients that might have affected help seeking and compliance. Good examples are the studies by Bush et al. 30 exploring the influences on smoking in Bangladeshi and Pakistani adults in the UK, and the multi-centre cross-cultural postnatal depression study. 31

There has been an increasing interest and use of qualitative research methods in primary health care and general practice articles. Britten 32 states that “the nature of general practice is such that a variety of research methods are needed to explore all its intricacies” He adds that qualitative methods can enrich research in general practice by opening up areas not amenable to quantitative methods, topics such as patient satisfaction, doctor-patient interaction, in addition to identifying and explaining attitudes, beliefs and behaviour. In addition, qualitative research has been used in the assessment of new technology methods used in health care. For example, the studies on the implementation of the National Health System information technology programme in the UK. 11 , 33

Qualitative research methods are receiving an increasing recognition in health care related research. The use of qualitative research in health care enables researchers to answer questions that may not be easily answered by quantitative methods. Moreover, it seeks to understand the phenomenon under study in the context of the culture or the setting in which it has been studied, therefore, aiding in the development of new research instruments, such as questionnaires that are more culturally acceptable. However, because health care related research has, for decades, been based on quantitative methods, the introduction of a new method requires researchers in health care who attempt to use it, to have a thorough understanding of its theoretical basis, methodology and evaluation techniques.

Acknowledgments

I would like to thank Sultan Qaboos University, Oman, for granting me a scholarship to do my PhD at the University of Nottingham, UK. I am also grateful to my PhD supervisor, Dr Margaret Oates, for her guidance and support.

Health | Biden signs executive order on advancing study…

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Health | Biden signs executive order on advancing study of women’s health while chiding ‘backward’ GOP ideas

President Joe Biden speaks during a St. Patrick’s Day reception in the East Room of the White House, Sunday, March 17, 2024. (AP Photo/Stephanie Scarbrough)

First Lady Jill Biden waves to attendees during an event with military families at Fort Buchanan in San Juan, Puerto Rico, Sunday, March. 17, 2024. (AP Photo/Alejandro Granadillo)

By COLLEEN LONG (Associated Press)

WASHINGTON (AP) — President Joe Biden signed an executive order Monday aimed at advancing the study of women’s health by strengthening data collection and providing better funding opportunities for biomedical research while chiding Republicans for having “no clue about the power of women” but saying they’re “about to find out” come November’s election.

Women’s health has long been underfunded and understudied. It wasn’t until the 1990s that the federal government mandated women be included in federally funded medical research; for most of medical history, though, scientific study was based almost entirely on men.

“We still know too little about how to effectively prevent, diagnose and treat a wide array of health conditions in women,” said Dr. Carolyn Mazure, the head of the White House initiative on women’s health.

Today, research often fails to properly track differences between women and men, and does not represent women equally particularly for illnesses more common to them — which Biden suggested his order would help change.

“To state the obvious, women are half the population and underrepresented across the board. But not in my administration,” the president said, drawing raucous applause at a White House reception marking Women’s History Month.

Biden said he’s long been a believer in the “power of research” to help save lives and get high-quality health care to the people who need it. But the executive order also checks off a political box during an election year when women will be crucial to his reelection efforts. First lady Jill Biden is leading both the effort to organize and mobilize female voters and the White House Initiative on Women’s Health Research.

The announcement comes as the ripple effects spread from the Supreme Court’s decision that overturned federal abortion rights, touching on medical issues for women who never intended to end their pregnancies. In Alabama, for example, the future of IVF was thrown into question statewide after a judge’s ruling.

In his comments at the reception, Biden didn’t mention by name former President Donald Trump, who is now running to reclaim the White House. Instead, he referred to “my predecessor” who had been “bragging about overturning” the Roe v. Wade decision that had guaranteed the constitutional right to abortion.

The president suggested that would hurt Trump and the GOP during this fall’s election, saying, “You can’t lead America with old ideas and take us backward.”

Further leaning into politics, Biden said his administration has “turned around the economy because we focused on women,” noting that female unemployment had fallen and the number of women-owned small businesses had increased.

He said his administration has ensured that “women can access jobs in sectors where they’ve been historically underrepresented” and said he’d told leaders from some of the nation’s top labor unions that he wants to see more women and minorities in their ranks.

Women were a critical part of the coalition that elected Biden in 2020, giving him 55% of their vote, according to AP VoteCast. Black women and suburban women were pillars of Biden’s coalition while Trump had a modest advantage among white women and a much wider share of white women without college degrees, according to the AP survey of more than 110,000 voters in that year’s election.

Vice President Kamala Harris, women’s health advocate Maria Shriver and the first lady also addressed the reception.

“Finally women will get the health care we deserve,” Jill Biden said, saying the order signed Monday was “without precedent.”

Harris drew strong applause for noting that she “stood before you as the first woman vice president of the United States” and talked about visiting an abortion clinic in Minnesota last week.

“There are those who are intent on dragging us backward,” the vice president said of Republican states that have limited access to abortion.

“We all face a question: What kind of country do we want to live in?” Harris said. “A country of liberty, freedom and rule of law? Or a country of disorder, fear and hate?”

Shriver joked that this is probably the first time a president has signed an executive order that mentions menopause and said the action could only be taken “by a president who respects women.”

The National Institutes of Health is also launching a new effort around menopause and the treatment of menopausal symptoms that will identify research gaps and work to close them, said White House adviser Jennifer Klein. NIH funds a huge amount of biomedical research, imperative for the understanding of how medications affect the human body and for deciding eventually how to dose medicine.

Some conditions have different symptoms for women and men, such as heart disease. Others are more common in women, like Alzheimer’s disease, and some are unique to women — such as endometriosis, uterine cancers and fibroids found in the uterus. It’s all ripe for study, Mazure said.

And uneven research can have profound effects; a 2020 study by researchers at the University of Chicago and University of California, Berkeley, found that women were being overmedicated and suffering side effects from common medications, because most of the dosage trials were done only on men.

The first lady announced $100 million in funding last month for women’s health.

___ Associated Press writer Gary Fields contributed to this report.

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