social work research gives service users a

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68 Service User Involvement in Research: Ethics and Values

Jan Wallcraft, University of Birmingham

• Published: 04 March 2015
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This chapter traces the development of service user involvement in research and user-controlled research, from its origins in the early 1990s to the present day where mental health researchers are expected to involve service users. It looks at why service users wanted to be involved in research and their issues of concern, including the effects of treatment, staff attitudes, and human rights. Values in research are linked to the epistemological underpinnings of research, and it is argued that service users’ ways of knowing based on experience are in conflict with mainstream research based on claims of objectivity and neutrality. Service user involvement at all levels from consultation to control is explored with examples. The benefits and problems of working in partnership are explored, and the chapter ends with an assessment of the impact of involvement in research and how it can lead to change.

Introduction: Service Users’ Input to Research in the Twentieth Century

Mental health service user involvement in research (as researchers rather than merely subjects of research) in the UK has been evident for at least 20–25 years, when the service user/survivor movement began to gain momentum with regional and national networks ( Wallcraft and Nettle 2009 ). Beresford (2009) makes a clear distinction between “user-controlled research” and “user involvement in research” (p. 181) and this distinction will be adopted in this chapter.

Although people diagnosed as mentally ill have from time to time spoken out and even set up groups from the seventeenth century onwards ( Wallcraft et al. 2003 ), mental health service user involvement in research is a much more recent phenomenon. As late as the 1980s and early 1990s service users were rarely invited to get involved in mental health research, except as research subjects ( Campbell et al. 1993 ). Some, however, began to do small-scale research, often unpublished or self-published, including small surveys and collections of narratives, and information gathering within service user groups in order to challenge existing forms of knowledge about mental health ( Beresford and Wallcraft 1997 ; Wallcraft 1998 ; Wallcraft and Nettle 2009 ). Some, such as the author, began to carry out mental health research as part of courses of formal study ( Wallcraft 2009 ), or began to gather information and service users’ views as part of campaigning work to develop a collective voice and presence for service users, and to influence policy and service provision ( Pembroke 1994 ; UKAN 1996 ). At this stage, the work was small scale and usually unfunded, with little quality control from academic institutions. Whatever the faults from an academic perspective, the early research often made an impact at the level of consciousness raising among fellow service users and within the voluntary sector because it was addressing problems of importance for service users in an idiom they could relate to.

The early research work covered a range of concerns, such as experiences of mental health crisis, medication and ECT, eating disorders, and self-harm. It built on themes which had been explored in writings by service users since the 1970s in the USA and the UK. For example, Frank (1978) , a survivor of multiple ECT treatments, collected and self-published accounts of shock treatments through the ages, while Chamberlin (1978) wrote about her own experience and of consciousness-raising mental health self-help groups and alternative crisis provision. More writings began to emerge as former patients began to build communities of shared interest which gave them the confidence to participate in society and express their views in ways that would not have been possible in the earlier half of the last century. According to Rogers and Pilgrim (1991) , these groups and networks represented a new social movement (unlike the old social movements based on social class and economic role). This new movement was more about shared identity and experience, and the voicing of painful, formerly shameful, and hidden experiences.

Harper and Speed (2012) characterize the movement as a rights-based struggle for an alternative to the dominant biomedical discourse which kept service users and survivors from the production of knowledge: “Historically, the survivor movement represented an attempt to transform medical dominance. It sought to offer a counter-hegemonic strategy, based on non-medical understandings of emotional distress, informed by social justice and equality” (p. 18). The collective movement helped former patients to share the struggle to be recognized and to fight back against oppression, isolation, and exclusion ( Campbell 1996 , 1999 ): “Legends of oppression met and overcome are important parts of the service user/survivor culture” ( Campbell 1999 , p. 198).

Arising from these communities of shared interest, service users in the USA and UK produced, or helped to produce, collections of narratives ( Sutherland 1976 ; McNeill et al. 1986 ; Susko 1991 ; Read and Reynolds 1996 ; Shimrat 1997 ; Leibrich 1999 ) and books based on personal journeys or collections of shared experiences ( Sutherland 1976 ; McNeill et al. 1986 ; O’Hagan 1993 ; Pembroke 1994 , 2005 ).

Narrative can be a form of research as well as a form of consciousness raising for the service user/survivor movement. The act of eliciting people’s stories can be of value to the person concerned as well as to the researcher and the wider community: “The stigma of mental illness is often cited as one of the most difficult problems that psychiatric patients and former patients have to contend with in their lives … Encouraging the telling and dissemination of the life-stories of mental patients could be an important means of changing this” ( Wallcraft 2002 , p. 106).

Kalathil (2011) found that the process of carrying out narrative research with black women about what helps their recovery from mental distress was in itself seen as helping their recovery:

It is significant that many women found the very act of narrating their stories enabling and considered it part of their recovery process. Indeed, for some, this was the first time they were asked to tell their stories and be given a forum and framework within which to develop and tell their story. This in itself, we believe, is a significant achievement of this project. ( Kalathil 2011 , p. 76)

These stories offer a contrast to the case study approach to recording patients’ histories, with its focus on disease symptoms, lacking social or personal life context. Narrative can give greater understanding of people’s needs and what helps in practice ( Wallcraft 2007 ). The following is from a piece by O’Hagan (2009) , in which she intersperses her own notes made during a hospital admission with her case notes later obtained:

Today I wanted to die. Everything was hurting. My body was screaming. I saw the doctor. I said nothing. Now I feel terrible. Nothing seems good and nothing good seems possible… Flat, lacking motivation. Sleep and appetite good. Discussed aetiology. Cont. LiCarb 250 mg qid. Levels next time. ( O’Hagan 2009 , p. 200)

This small extract shows a complete divergence of issues of concern and value between the patient and doctor; one related to subjective feelings and fears about the future, the other to physical manifestations and levels of medication. There is no communication between the two.

The appearance, from the late 1970s onwards, of growing numbers of individual and collected personal stories began to give a voice to people who were marginalized in society and excluded from mainstream mental health research that was written in the language of psychopathology, clinical psychology, or social psychology.

The first types of user-led research were social surveys: for example, In Pursuit of Wellness in the USA ( Campbell 1989 ), in which 500 service users living in the community were asked about the quality of their lives, and in the UK ( UKAN 1996 ) a national member survey that collected and publicized experiences and views about ECT. Work of this type was carried out entirely in pursuit of values and principles, in the absence of substantial funding or encouragement, to advance the largely silenced perspectives of current or former psychiatric patients.

This early period of unfunded voluntary research and student project work by service users/survivors and voluntary sector user-led initiatives resulted in an exploration of issues of concern for service users which psychiatric or psychosocial researchers were not taking into account. These include the lived experience of receiving services; the sense of disempowerment and often outrage at the treatment people were receiving; the experience of often hurtful attitudes on the part of staff; the lack of concern shown by professionals about the adverse effects of treatment; the lack of choice and information given; and the feelings of having been misrecognized, misheard, and misconstrued which stayed with people often for many years after their first encounters with psychiatric treatment.

In addition to treatment issues, people wanted to recount their life stories before and after diagnosis ( Susko 1991 ; Read and Reynolds 1996 ; Curtis et al. 2000 ). Some people pointed out that their life stories had not been elicited by professionals, and had not been taken into account at any point during diagnosis and treatment—yet these histories often contained experiences of trauma or abuse and mistreatment in childhood and early adulthood which they felt had led to their mental health problems ( McNeill et al. 1986 ).

Additionally, there were experiences more specific to certain groups, such as women, working-class women in particular, black women, black men, Asian people, African and African-Caribbean people, and gay people ( Patel and Fatimilehin 1999 ; Chambers 2009 ; Carr 2013 ). These specific issues seemed to have no fit with diagnostic categories except in a negative way, in that some groups seemed to attract certain particularly unpopular diagnoses with greater frequency ( Fernando 1999 ). Clinical and academic researchers and research bodies appeared to see the diversity of populations as not especially relevant when it came to the scientific logic of psychiatric diagnosis, where the point was to create categories which remained true irrespective of personal characteristics or demographic categories.

Emergence of Service-User-Led Research in the Voluntary Sector

Sweeney (2013) lists watershed moments for the emerging work of service users as researchers when this work was recognized, supported, and funded by nonprofit research bodies. One such key moment was the publication of Have We Got Views for You , a service user evaluation of mental health case management ( Beeforth et al. 1994 ) which directly challenged the routine omission of service user voices from research: “User researchers should be used more widely in the evaluation of services. User researchers bring a new and different perspective, which generates new ideas and constructs and enhances the quality of the whole research process” ( Beeforth et al. 1994 , p. 16). Sweeney (2013) also cites as part of this emergence into the mainstream the work of the User Focused Monitoring team and the Strategies for Living user-led research team ( Faulkner and Layzell 2000 ; Kotecha et al. 2007 ) (at the Sainsbury Centre for Mental Health and the Mental Health Foundation respectively).

The main ethical approach emerging from service users/survivors was one of recognition of the rights and humanity of patients as people, as individuals with particular distinctive life experiences, and also as members of groups and subgroups with a cultural history and shared issues ( Campbell 1999 ). These personal and collective histories were in sharp contrast to the objectivized psychiatric histories contained in people’s case notes.

Different Cultures/Groups with Different Experiences—Are Some Groups “Hard to Reach”?

Initially, the service user/survivor movement in the UK was predominantly white, as inherent racism and unawareness of the extent of racism was as endemic among white service users as it was among the wider society. Wallcraft et al. (2003) , in researching the service user movement, found that most black and minority ethnic (BME) service users they spoke to did not see themselves as belonging to the movement.

Members of the largely white service user movement were slow to recognize that there were other groups who were even more oppressed, suffering as they did not only the social mistrust accruing to being a psychiatric patient but also additional layers of social marginalization as members of ethnic, racial, or religious minorities ( Chambers 2009 ; Essien 2009 ; Trivedi 2009 ): “BME women are physically much more visible than women in white communities, and those with mental health problems suffer double discrimination … when the mental health needs of black people are researched, it usually means black men, and when the mental health of women is researched, it generally means white women” ( Essien 2009 , p. 67–68).

There are, in addition, people with a combination of mental health and physical, sensory, or learning disabilities, or who have additional issues such as problems with alcohol or street drugs ( Staddon 2013 ), and those marginalized because of differences from mainstream heterosexual culture ( Carr 2013 ). These additional complexities of identity, added to the differences of gender, age, and social class meant that those who did form a social movement and begin to insist on involvement in the generation and use of knowledge about mental health could not represent all, or even the majority of patients and service users: “there is no ‘we’ of the service user/survivor population; that is, except where we have all experienced mental distress and dominant mental health discourses” ( Armes 2009 , p. 142).

The description “hard to reach,” however, is often seen to be insulting to those who feel little attempt has been made to do the reaching in the first place; that barriers have instead been placed in their way to prevent them having a voice. Kalathil (2013) argues that the idea of “hard to reach” places the problem within the groups rather than recognizing how they have been marginalized by policies and practices that exclude them: “The problem with using a term like ‘hard to reach’ to define these groups is that it assumes homogeneity within disparate groups and places the problem within the group rather than the approaches used to enable engagement” ( Kalathil 2013 , p. 123).

Kalathil (2013) , citing other work as well as her own, adds that these communities have been called “obstinate, disadvantaged, illiterate, information-poor and chronically uninformed” or, specifically with regard to mental health user involvement, “difficult and separatist” (p. 123). She concludes that there are no communities that are by definition hard to reach, but that there are “practices, prejudices, belief systems and experiences that collude to create the exclusion of some groups from involvement initiatives” ( Kalathil 2013 , p. 131). She also argues (p. 125) that involvement of people from racialized groups needs to take into account the “negative and difficult experiences that people have been through” and not expect all discussions to be positive and collaborative (as set out in Department of Health statements).

Ways of Knowing—Competing Epistemologies in Mental Health Research

The positivist philosophical approach to knowledge is based on a belief that reality can be observed and described objectively. Researchers try to isolate the phenomena being observed—for instance, testing drugs with specified active ingredients and observing their effect on specific disease symptoms. They choose methods such as randomized controlled trials (RCTs) and systematic reviews, which are claimed to take an unbiased approach and which other researchers could replicate with similar results.

Most mental health research is based on this philosophic approach. Although not all mental health research uses these methods, it is the approach which has traditionally been most highly valued, and regarded as producing the most reliable evidence. It therefore receives the greatest share of funding and credence. This approach has also been termed the “biomedical” model of mental health ( Wallcraft 2007 , p. 342). Even before the twenty-first century, emphasis on “evidence-based medicine” through the National Institute for Clinical Excellence (NICE) and government funding of research, psychiatric consultants and teaching hospitals using positivist or biomedical principles of research held most of the power and resources in defining knowledge of the field.

Beresford and Boxall (2013) argue that the whole area of mental health suffers a lack of credibility compared to physical medicine: “each of the key professions involved in mental health—psychiatry, nursing, social work, occupational therapy, and psychology—faces its own difficulties and problems of credibility and authority. None carries with it the strength and authority invested in professions like physical medicine or the law” ( Beresford and Boxall 2013 , p. 80). They argue that this makes professionals more wary of the development of service user knowledge which may “further undermine their academic or ‘expert’ status” (p. 80).

So long as RCTs and systematic reviews of RCTs are the predominant type of research to be funded and regarded as the highest standard of evidence, service users can have little influence on research: “positivist researchers seek one primary outcome, leaving out other possible effects of treatment. There is no opportunity for personal testimony” ( Wallcraft 2013 . p. 200). Thomas and Bracken (2004) argue that positivism “is simply unable to deal with complexity of social and cultural environments” (p. 363).

The French philosopher Foucault (1972) developed an epistemological approach that he termed “the archaeology of knowledge” for unearthing the origins of scientific discourses. This enables a critical re-evaluation of their basic assumptions. Foucault used the development of the knowledge field of “psychopathology” (the biomedical or positivist approach to mental ill health) to demonstrate his “archaeology”: “[Foucault] argues that psychopathology cannot be said to exist as an objective entity independent of the particular interweaving of social, industrial, cultural, religious, legal, professional and political relationships in which the discourse historically emerged and was developed” ( Wallcraft 2002 , p. 18).

Foucault’s approach to discourse enables a range of critiques to the assumptions underpinning positivist, biomedical research. In the twenty-first century, other forms of research are emerging more strongly, some of which adopt participatory and emancipatory principles that are more enabling of service user involvement: “Certainly, participatory methods can go beyond the statistics that record and analyse numbers to include meaningful interactions with those living with a psychiatric diagnosis when we listen to the voices of engaged and involved participants: productive, thinking, feeling, creating, honoring others’ values and choices, and respectfully listening as each person understands his/her own voice” ( Campbell 2013 , p. 131). These forms of research have been more likely to be found in social research and anthropology, but now there are more examples happening in mainstream academic and clinical research such as the Northumbria University care coordination study ( Jones and Hughes 2011 ).

Armes (2009) uses the Foucauldian epistemological approach, arguing that mental health knowledge is relative since it is “framed in language and imagery that does not correctly describe reality” (p. 143). He quotes Foucault’s writings on how during the Enlightenment period in the eighteenth century, a process began where the high social value placed on “reason” led to mad people being treated as the embodiment of “unreason.”

  Webb (2006b) also talks about the need to reclaim language, and about the role of service user academics in challenging traditional discourses of madness, arguing that:

Mad Culture is the expression of a community of people, from all around the world, who have experienced what is often called “madness.” Although madness is usually a pejorative term, Mad Culture reclaims the language of madness to give voice to the subjective experience of it as it is lived and in our own words … Mad Culture asserts the legitimacy of madness, with its own distinct voice, as part of the diversity of what it is to be human … Despite this, and unlike … other social movements, Mad Culture is only just beginning to develop an academic discourse as a vibrant and necessary part of an emerging culture that will no longer remain invisible and silent. ( Webb 2006b , pp. 9–10)

Different Values in Research

The different perspectives of service users and professionals are an indication of different value bases, according to Wallcraft (2007) : “The key values for service user/survivor-led research include a commitment to change, expertise based on personal experience, countering stigma, redressing power imbalances, and desired outcomes such as self-management and recovery of a satisfying life” ( Wallcraft 2007 , p. 349).

Some research led by service users has specifically asked the questions about values in research, including this study by Turner and Beresford (2005) :

We asked people whether they thought that there are particular values and principles which underlie user controlled research. Participants clearly thought that there are. The values and principles which they identified seem to be grounded in those which guide the disabled people’s and service users’ movements more generally … These values and principles include ones of: empowerment; emancipation; participation; equality; antidiscrimination. ( Turner and Beresford 2005 , p. 27)

However well intentioned clinical researchers may be, it is unlikely that they will fully share this set of values and outcomes. According to Turner and Beresford (2005) : “The continued dominance of medically based research associated with positivist values of ‘scientific rigour’ and ‘neutrality,’ are seen by service users to lead to the devaluing of user controlled research, with its emphasis on subjectivity, personal experience and allegiance to disadvantaged groups’ ” (p. ix).

Experience-Based Knowledge versus “Objective” Knowledge

A key aspect of service-user-controlled research and the efforts service users make to be meaningfully involved in research relates to debates about ways of knowing and making meaning. “It formalises the desire of users and survivors to generate our own knowledge about our experiences” ( Sweeney 2013 , p. 1).

  Beresford and Boxall (2013) argue that the role of psychiatric professionals as “knowers” of mental health issues, madness and distress seems to have been conditional on the exclusion of the direct knowledge of service users themselves (p. 80): “One way in which this continues is on the basis of the supposed inferior methodological value of survivor research because it is not based on positivist research values” ( Beresford and Boxall 2013 , p. 80).

A psychiatrist of 20 years standing, Middleton (2013) argues that the idea of mental health difficulties being framed as medical illnesses is historically recent, but has become universally accepted and “defines participants’ roles and power relations in ways that influence their expectations of research” (p. 11). He updates the discourse approach pioneered by Foucault, arguing that the current acceptance that “madness is a collection of illnesses to be treated by professionals as in any other field of medical endeavour has become a dominant public discourse” (p. 13). Using a discourse approach to show the metaphorical, rather than the physically existing, nature of the concepts underpinning psychopathology, allows the opening up of a critical approach to understanding the related power dynamics as constructed but not objectively based.

This approach allows the current power divide between service users and service providers to be seen as resulting from a long-established discourse in which, despite the fact that “madness” and other terms do not have fixed, objective meanings, they are used to “describe and justify the social exclusion and confinement of the disturbing, the threatening or the merely inconvenient” ( Middleton 2013 , p. 12). Middleton updates Foucault by using “sick role” theory to extend the metaphor of “illness” into present time, showing how poorly mental health difficulties fit into the “classic sick role framework” (p. 21), as they are not stable entities which can be easily understood and which appear similarly to different observers. Service user researchers, he argues, are constrained by “sick role” assumptions which infantilize the value of their knowledge alongside “the ‘grown-up’ world of science and clinical trials” (p. 22). He labels this division as an “epistemological fallacy” and argues that all knowledge needs to be co-constructed.

Turner and Beresford (2005) argue that medical dominance encourages the continued reliance on:

a traditional positivist approach to research, based on the valuing of criteria of “neutrality,” “objectivity” and “distance.” This has been associated with an emphasis on quantitative research approaches, particularly randomised controlled trials (RCTs), which have come to be seen as the “gold standard” of research. Emancipatory and user controlled research approaches, with their explicit acknowledgement of subjectivity and bias and their frequent reliance on qualitative research methods tend not to be strongly valued in this context. ( Turner and Beresford 2005 , p. 65)

Sweeney (2013) points out that even in sociological research, which aims to be more qualitative, for example the participant observation of William Foot Whyte and Erving Goffman, the “voices of the marginalized” were only represented “through the lens of detached academic interpretation” (p. 2); in medical sociology, a researcher argued that “lay expertise” was an oxymoron since lay people only had personal experience but no skill in diagnosis or management of illness (pp. 2–3).

Sweeney further argues that experiential knowledge is the “bedrock of survivor research” (p. 4), and that instead of rejecting lay expertise we need to “seek ways of including range and diversity, and of synthesizing individual experiences into collective understandings of commonalities and differences” (p. 5). In this way, she asserts the role of survivor research in “generating our own knowledge” ( Sweeney 2013 , p. 6).

Standpoint theorists argue for basing knowledge and thinking about knowledge in the lives and thoughts of marginalized people. They counter the claims that truly scientific knowledge is only that which uses empirical, objective methods to separate out positive, measurable facts about reality.

Feminist thinkers such as Harding (2002) argue that all knowledge is situated according to a standpoint, even if this standpoint is not openly acknowledged, and that the standpoint of women has been systematically excluded from knowledge production. She argues that openness about standpoints leads to a stronger form of objective knowledge:

Empiricism tries to purify science … by adherence to what it takes to be rigorous methods for the testing of hypotheses … Thought that begins from the lives of the oppressed has no chance to get its critical questions voiced or heard within such an empiricist conception of the way to produce knowledge … Starting off research from women’s lives will generate less partial and distorted accounts not only of women’s lives but also of men’s lives and of the whole social order. ( Harding 2002 , pp. 55–56)

Beresford and Boxall (2013) suggest that: “A mental health service user/survivor standpoint could bring together mental health service users (whatever the aetiology of their accredited or perceived ‘mental illness’ on the basis that their lives have been subjected to … similar ‘solutions’ ” (pp. 77–78). They further argue that: “Adopting standpoint theorists’ criteria for assessing knowledge would indicate that knowledges produced from a service user standpoint should be assessed according to their challenging of injustice, their creation of cultures of resistance, and their transformative potential in the lives of mental health service users” ( Beresford and Boxall 2013 , p. 78).

Armes argues that service users need to reclaim their capacity to reason: “One of the first tasks of a service user/survivor standpoint must be to challenge the ‘reason/unreason’ dichotomy” ( Armes 2009 , p. 145). He argues that service users do apply reason and are aware of chains of reason that lead to loss of hope, for instance. Even “psychotic” experience of oneness with the universe can imply a reasonable belief in spiritual powers at work: “Employing a service-user/survivor standpoint can help to redefine the term ‘madness’ ” ( Armes 2009 , p. 146).

Straughan (2009) is a former service user who took the path of joining the elite circle by gaining a PhD in order to gain the equal status needed to influence change. She argues that research quality is at least as important as standpoint: “Whether it is research from a user perspective or not, research must stand by the quality of the work, not by the quality or meaning of the standpoint alone” ( Straughan 2009 , p. 107). However, Straughan (2009) is concerned that service user research can become marginalized on the basis of the standpoint, if this is the aspect emphasized, rather than by the competence and quality of the work, and proposes that people who do this work should be termed “researcher from a service user standpoint” or simply “researcher” (pp. 116–117).

Survivor researchers such as Russo (2012) argue that survivor-led research opens up the debate about whose beliefs and interests research is serving:

Survivor-controlled research acknowledges the fact that we are all part of the social reality we are exploring and that who we are will always affect our interactions, including those in the research process. The identities of researchers, their knowledge, experiences and beliefs have an effect on all research, not just survivor-controlled projects. However survivor research is transparent about its researchers’ standpoints and willing to work with them instead of pretending that these are neutralized as soon as academic degrees are conferred. Instead of espousing a notion of “scientific distance,” it promotes closeness to the subject as beneficial to the quality of the research. ( Russo 2012 )

Gillard et al. (2013) describe a fully collaborative process, where recognition of the differing standpoints of the university research lead, the clinical research, and the service user researcher were negotiated during the process of a research study, through the willingness of the academic and the clinician to engage in dialogue and step back from controlling the outcomes: “It was only through strenuous dialogue within the team, and through explicit acknowledgement of ‘where we were coming from’ in offering our interpretations, that we managed to move beyond those epistemological tensions and co-produce our analysis” ( Gillard et al. 2013 , p. 65). They argue that through this process of “self-conscious reflection on who we were and our commitment to discursive research” (p. 66), they were able to look critically at the diagnosis of personality disorder, and through a “moral discourse” to co-produce “a new narrative that captures the lived experience of personality disorders in the context of treatment practice and recovery policy in the UK” ( Gillard et al. 2013 , p. 66).

David Webb ( Webb 2006a , 2006b ) broke new ground in experience-based research, writing his PhD thesis as two volumes, one being “Thinking about suicide,” which he terms a “thick phenomenological description” of his first-person experiences of suicidality, and the other being the exegesis or commentary, which “explores and contextualises the narrative within an academic discourse.” Webb describes his method: “First-person research, which is what this thesis represents, is generally not recognised by mainstream suicidology as ‘real’ research, which is the main reason that this thesis must speak to suicidology from outside, rather than from within, the discipline” ( Webb 2006b , p. 5).

Carr (2013) terms research based on personal accounts of experience “autoethnography,” and attests to the power of “personal accounts and narrative artefacts” in contributing to the way in which lesbian, gay, and bisexual (LGB) people see themselves personally and politically. She states however, that it is still rare to find autobiographical accounts by LGB people with mental health problems.

She argues that although autoethnography has been criticized as potentially at risk of self-indulgence and narcissism, it can also be rigorous, theoretical, and analytical. She concludes that: “The methodological principles and framework of autoethnography could offer an important means of capturing individual narratives and collective knowledge and be a useful form of research for service user researchers wanting to challenge ‘oppressive’ structures” ( Carr 2013 , p. 146).

Service Users in Research: From “User Involvement” to “User Control”

In recent years, organizations such as the Mental Health Research Network ( Staley 2013 ) have taken on government pressures to demonstrate involvement and responded to the growing interest in research among service user groups, developing sets of principles and guidance for involvement of service users, carers, and the public in research ( Hanley et al. 2004 ; Pollard and Evans 2013 ). There is general agreement about the importance of involving people from the start, at all levels, and reducing power differentials. In addition, there are the practical issues of funding and recompensing people for their involvement ( Schrank and Wallcraft 2009 ).

However, many research projects fail to involve service users from an early stage of development, fail to build in a sufficient budget or suitable payment and support systems to enable involvement to work, and fail to take on board the suggestions and criticisms of service users. According to an evaluation of involvement in the work of the Mental Health Research Network:

The majority of researchers (40%) are involving service users as members of their trial steering committee/project steering group. There is a great deal of variation in how well this is working. In some projects, service users have had a major impact for example on trial design and recruitment processes. In others their impact has been minimal. Some researchers report finding it difficult to enable service users to contribute to committee meetings … Just under 20% of researchers consult service users at the design stage. ( Staley 2013 , p. 5)

For effective involvement, where service users’ values are incorporated into research, guidance suggests the importance of involving service users at the outset. McGowan et al. (2009) summarize service user research concerns from literature as including involvement in care treatment programs, and in discrimination and rights-related issues. A consultation with service users and carers on their research priorities ( Samele et al. 2007 ) added further issues including GPs and primary care, prevention and mental health promotion, non-medication-based interventions, services for people in crisis and person-centered care planning. On the basis of this research they recommended that “user-centred outcome measures need to be encouraged in all trials of mental health interventions” (p. 23). Training for service users in skills they need in order to be able to take part in research, alongside experienced researchers as equals, is also a feature of good practice ( Schrank and Wallcraft 2009 ). This took place in a research program on care coordination based at Northumbria University ( Jones and Hughes 2011 ) but projects of this nature are still a rarity.

Levels of Involvement

Sweeney and Morgan (2009) identify four levels of involvement in research: consultation, contribution, collaboration , and control . Each of these levels has value, and may be used at different stages of a research process, or can be suitable ways to carry out a particular piece of work.

Consultation with service users at an early stage of thinking about research can help to establish priorities. Minogue (2009) describes consultation as “a means of bringing the service user perspective into the research process” (p. 159) but argues that it should be seen as part of a continuum of involvement, not as a sole method. She adds that it is important to evaluate consultation processes: “Lack of evaluation of the process and impact of involvement and absense of recorded outcomes can be a significant gap in terms of measuring the value of consultation” ( Minogue 2009 , p. 164).

With regard to contribution , Sweeney and Morgan (2009) say that the most obvious example of the “contribution” level is when a service user is employed as a member of a research team and can draw on their personal experiences to influence and inform the work (p. 29).

Collaborative research, as Rose (2009) argues, can be difficult to do well, since power differentials become apparent between service users and academics or professionals in the organizations they work with: “It will usually be the case that the collaboration is unequal and not a true partnership” ( Rose 2009 , p. 177). One way in which unequal collaboration can happen, according to Rose, co-director of SURE (Service User Research Enterprise) at the Institute of Psychiatry, is that service users may be involved in qualitative, rather than quantitative, aspects of research, when it is the quantitative aspects that receive the higher status. However, she reports on a successful collaboration to carry out a systematic review of ECT at SURE (see below, “ Working Together as Equals ”).

In terms of control , service-user-controlled research is described by Turner and Beresford (2005) , Beresford (2009) , and Faulkner (2010) . Beresford (2009) defines user-controlled research as that which is actively controlled by service users and is accessible to them, and that is committed to trying to make changes in line with service users’ rights and needs, i.e. it is generally action-oriented. This form of research is highly valued by service users but is less frequent than service user involvement in research, and levels of actual control may be disputed, for instance, if a user-led research project is situated within a non-user-led organization, such as the Strategies for Living research project ( Faulkner and Layzell 2000 ). This research was funded and run by the Mental Health Foundation (a nongovernmental organization) The research was carried out by service user researchers and supervised by a steering group made up entirely of service users. But the researchers were employees of the organization, which was not user led. While day-to-day responsibility for the project rested with the steering group and the researchers, overall responsibility for the finance and management remained with the organization.

Benefits service users express about user-led research ( Turner and Beresford 2005 ) include its usefulness, since it starts from service users’ shared experiences; the potential to identify new areas that matter to service users; the generation of trust among potential research participants; and the actual benefits that research participants may experience from taking part in research where the relationships are empowering and equal. Faulkner (2010) studied seven user-led research projects (not all mental health), finding that “user-controlled research often arises from within groups of people frustrated by traditional research that overlooks or excludes them” (p. 42).

Examples of user-controlled research looking at issues ignored by the mainstream include the work of Read (2009) , who examined the experience of coming off psychiatric drugs. This work was based on a user-led project Read had previously carried out for Mind ( Read 2005 ). The research was founded on service users’ expressed concerns about the effects of psychiatric medication and the lack of medical support and advice on withdrawal or reduction of medication. The results showed that some people do successfully withdraw from medication with or without medical support, and that it is important that decision-making about prescribing, changing, reducing or withdrawing medication “should be made in a spirit of cautious experimentation, open-mindedness and collaboration, with the service user or patient being respected as the person whose wishes are ultimately paramount” ( Read 2009 , p. 166).

Working Together as Equals

Pollard and Evans (2013) refer to some of the problematic aspects of partnerships between service users and professionals. They suggest that while many articles about public involvement in research are framed in positive terms, this conceals many of the real-life difficulties, “We have much less concrete information about researchers who are sceptical or hostile towards PPI [patient and public involvement] in research” (p. 41). They argue that although it is relatively easy to involve service users in participatory research and qualitative research, it is less straightforward to do so in more positivist research. They refer to the well-reported dangers of power imbalances in research leading to “tokenistic PPI,” but add that another difficulty can be the emotional work required of researchers having to manage the expectations and subsequent disappointment of service user researchers at the slowness of the research process, and the “often little likelihood that findings from a project will be implemented in a service area” ( Pollard and Evans 2013 , p. 44).

According to Staley (2013) , in a review of involvement of service users in the Mental Health Research Network, the challenges reported by researchers seeking to involve service users include: a lack of time and resources, a lack of know-how, problems of recruiting service users and maintaining their involvement, and problems of managing the employment of service user researchers (e.g., supporting their careers after the project ends) ( Staley 2013 , p. 6). Pollard and Evans (2013) also refer to a sense of “moral imperative” felt by researchers to be involved in future development of service users who have taken part in research (p. 48).

However, there are a growing number of case studies of various types of research where partnership between service users and professional researchers from clinical or academic backgrounds has produced good results and useful learning about joint working in research.

Castillo (2010) describes a participatory and emancipatory research project undertaken to develop and evaluate a service (the Haven) for people diagnosed with personality disorders. The Haven’s participatory ethos was built on earlier work between Castillo (2003) and local service users to identify the needs of people labeled as having personality disorders. The service incorporated the following ethos, as described by Castillo:

Not only had The Haven been created around service users’ views, they would also continue to guide its development. Early abusive experiences represent a violation of boundaries and loss of power. Being party to decisions, and in control of developments, means that someone who has lost power in the past is not subject to and dependent on authority figures in order to progress. ( Castillo 2010 , p. 13)

The research group of service users who were themselves using the Haven service worked in partnership with Castillo, the project lead, for five years, and the process is set out in a series of research diaries in an appendix. The 10 people who were at the final meeting had been there from the outset, and the following quotations suggest the fundamental integration between the research process, the outcomes for the project’s clients, and the experiences of the research team:

Becky: It’s been a learning curve. It’s about believing in yourself and having other people believe in you. It’s not just a learning curve about the research project, it’s about how we’ve all changed and grown. Heather L: I enjoyed every minute of it. It was about being understood and helping us to understand each other. I also felt it helped me to remember my BA and academic work. It helped me to think, but it has also helped me to stop dwelling on bad things … Helen P: If all the clients here were still stuck where they were five years ago, how awful would that be … What it’s done for me personally, it’s got me into reading more academic literature. That can be quite a struggle when your head’s like a washing machine, quite a test. Jeff: It was a very productive time. I felt my opinions were really appreciated and that it was a very good project to have been part of, and to have been heard. It was all about self-worth. ( Castillo 2010 , Appendix II, pp. 30–31)

At the other end of the research spectrum Rose et al. (2003) and Fleischmann (2009) report on a partnership between service user researchers and traditional clinical researchers at the Institute of Psychiatry to carry out user-led systematic reviews, beginning with one on ECT. Service user researchers at SURE with lived experience of ECT led the work, and grey literature on service users’ experiences and non-RCT papers were included in the review. A psychologist and a psychiatrist who were not service users contributed their areas of expertise on memory and legal issues. The resulting study, despite its difference from other systematic reviews, which are based mainly on peer-reviewed RCT trials, was accepted as credible by NICE and included in its work to develop new guidelines on ECT. Fleischmann (2009) argues that “it is vital that users and survivors do get involved in systematic reviews as an important and powerful way of grounding reviews in lived experience” (p. 96). Beresford and Boxall (2013) cite this work as evidence that service user researchers have developed new ways of doing quantitative research more consistent with the aims and values of user-controlled research, one which “questions the assumed ‘neutrality’ of traditional RCTs on the basis that their outcome measures are defined by clinicians” (p. 76).

Conclusions

What is the impact of service user involvement in research? There are few studies that have specifically looked at the impact of service user involvement, rather than merely establishing that involvement in research has taken place, as is pointed out by McLaughlin (2010) , who argues that future studies need to look at the process of involvement as well as the impact:

Too often, successful service user involvement has been identified solely in terms of whether service users have contributed to the completion of a research project. This neglects both a focus on outcomes and the types of knowledge claims being made. There is a pressing need for a greater number of outcome studies and a more nuanced approach to the process, identifying where the process has been empowering and participatory and when it has not. ( McLaughlin 2010 , pp. 1605–1606)

Some studies have looked at the process and identified ways in which service users contribute to research, as in a study of service-user-led research ( Turner and Beresford 2005 ) which quoted participants as pointing out how service users draw attention to issues which concern them but which have not been sufficiently researched before:

[a participant] highlighted how user controlled research had already opened up new areas for development. She said: “You get a fresh perspective” (Discussion group C) and pointed to the whole field of alternative approaches, including spirituality and spiritual healing, in which user controlled research has encouraged new interest and developments. Participants pointed to how the NHS has been adopting alternative and complementary approaches to health in the light of the evidence provided by service users. ( Turner and Beresford 2005 , p. 62)

An evaluation of service user involvement (in a wider study which aimed to develop principles and indicators of successful service user involvement in research) found that the process was greatly helped by repeated sessions for joint reflection: “The sessions facilitated the development of trust and commitment as well as provided an opportunity to capture details of the impact of service user researcher involvement that might otherwise have been lost. The structure also offered a forum for mutual learning and the sharing of knowledge” ( Barber et al. 2011 , p. 610).

Beresford (2009) argues that academic research is assessed for its impact mainly in terms of academic citations, and user involvement in research is assessed for its improvement of the quality and outcomes of the research. He argues that these criteria for impact are too narrow, and assessment should also take in the effects of research on policy and on the service users involved. Beresford (2009) further argues that the impact of user-controlled research should be assessed in terms of its own values, including its influence on planning, policy and practice.

Service user involvement in research, and service-user-controlled research is attempting to do, and sometimes succeeding in doing, far more than adding value to existing research. It is challenging the established forms of knowledge and the means of producing knowledge in the field of mental health. It is questioning the underlying concepts, values, and power relationships underpinning knowledge and knowledge creation:

While survivor research is not based on an equivalent of the social model of disability, it does generally challenge medicalised individual models of mental health adopting a more social perspective … This is of value for a subject of research where social and personal factors operate in complex inter-relation and where traditional medicalised research has frequently failed adequately to address all aspects of mental health issues. ( Beresford 2009 , p. 190)

Research funders and academic researchers need to do more than invite service users to sit on panels to discuss research where the assumptions have already been established … Change will require a collaborative approach and a respect for personal experience, which has been absent from the previous 150 years of the development of biomedical psychiatry. ( Wallcraft 2013 , p. 208)

Armes, D. ( 2009 ). Getting better—in theory. In This is Survivor Research , edited by P.B.A. Sweeney , A. Faulkner , M. Nettle , and D. Rose , pp. 140–152. Ross-on-Wye: PCCS Books.

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Developing a framework for gathering and using service user experiences to improve integrated health and social care: the SUFFICE framework

Leeds Institute of Health Sciences, University of Leeds, 101 Clarendon Road, Leeds, LS2 9LJ UK

Lisa Pinkney

More people than ever receive care and support from health and social care services. Initiatives to integrate the work of health and social care staff have increased rapidly across the UK but relatively little has been done to chart and improve their impact on service users. Our aim was to develop a framework for gathering and using service user feedback to improve integrated health and social care in one locality in the North of England.

We used published literature and interviews with health and social care managers to determine the expected service user experiences of local community-based integrated teams and the ways in which team members were expected to work together. We used the results to devise qualitative data collection and analysis tools for gathering and analyzing service user feedback. We used developmental evaluation and service improvement methodologies to devise a procedure for developing service improvement plans.

We identified six expected service user experiences of integrated care and 15 activities that health and social care teams were expected to undertake. We used these to develop logic models and tools for collecting and analysing service user experiences. These include a narrative interview schedule, a plan for analyzing data, and a method for synthesizing the results into a composite ‘story’. We devised a structured service improvement procedure which involves teams of health and social care staff listening to a composite service user story, identifying how their actions as a team may have contributed to the story and developing a service improvement plan.

Conclusions

This framework aims to put service user experiences at the heart of efforts to improve integration. It has been developed in collaboration with National Health Service (NHS) and Social Care managers. We expect it to be useful for evaluating and improving integrated care initiatives elsewhere.

Electronic supplementary material

The online version of this article (doi:10.1186/s13104-016-2230-0) contains supplementary material, which is available to authorized users.

In the United Kingdom (UK) a rising population of older adults and a significant increase in the number of people with complex health needs means that more people than ever are receiving care and support from both health and social care services. Recent figures show that 15 million people have one or more long-term conditions and their care accounts for 70 % of the primary and acute care budget in England [ 1 ] whilst around 1.1 million people receive care at home, 80 % of whom are state supported [ 2 ]. The coordination of care and support for these people has historically been poor resulting in people falling through gaps in service provision, being ‘bounced around’ different services and having to explain themselves and their needs multiple times [ 3 ]. Poor coordination also results in duplication between health and social care services and unnecessary hospital stays, further increasing the financial burden on the system [ 4 ]. As a result there is currently a significant policy drive towards integrating health and social care support [ 5 ] and improving the experiences of service users with complex needs [ 6 ].

A range of integrated care initiatives have been implemented across the UK in recent years. In 2009 the Department of Health launched a 2-year pilot programme to explore and evaluate different models of integrated care [ 7 ]. In 2013 this was followed by the naming of 14 ‘integration pioneers’ across the UK where innovative ways of delivering coordinated care and bringing services closer together are being pursued [ 8 ]. These and other sites have used a range of approaches including multidisciplinary meetings [ 9 ], risk profiling and case management [ 10 ] and pooled service and commissioning budgets [ 11 ]. The majority of initiatives in the UK have tended to take place at a micro level where providers seek to deliver integrated care for individual service users through care co-ordination, care planning, use of technology and other approaches [ 12 ]. Such initiatives include setting up community-based co-located teams of nurses, social workers, occupational therapists and physiotherapists [ 13 – 15 ].

In an effort to learn lessons about how best to provide integrated health and social care and the impact of integrated working, recent initiatives have been the subject of a number of evaluations. Evaluative activities have largely focused on emergency hospital admissions and the barriers to integrated working from the perspective of health and social care staff [ 10 , 16 , 17 ] and findings to date have not been especially positive. The national evaluation of the UK’s integration pilot programme, for instance, showed no evidence that pilot sites were reducing the level of emergency hospital care [ 7 ], whilst a number of studies have highlighted a range of barriers to integrated working including professional/disciplinary mismatches, lack of clarity about the purpose of integration, lack of understanding and clarity about each other’s roles and the use of rhetorical claims and ideals to quash real experiences [ 14 ].

There has been less emphasis on how integrated ways of working are impacting on service users and how they can be designed to provide service users with a better experience of care. Evidence to date suggests that there is frequently a mismatch between the aims and impact of integration on service user experiences [ 7 , 18 ], but there is general agreement that service user experiences of integrated care are not well defined or appropriately captured, especially by those organisations who are actively developing and implementing integrated care initiatives [ 3 , 19 ]. Indeed, previous evaluative efforts have been criticized by service users and other stakeholders for focusing on descriptions of what integrated care should look like and what organisations should do, rather than on the voices and experiences of service users [ 19 ].

By failing to capture how service users are experiencing efforts to improve integration and coordination, organisations are also missing a potentially powerful catalyst for improving integrated working. During recent consultations, service users and other stakeholders across the UK were clear that efforts to evaluate service user experiences of integrated care should be used for driving improvement and encouraging better communication and joint working between health and social care professionals [ 19 ]. This is supported by evidence on interprofessional teamworking, which shows that having a shared sense of purpose focused around improving outcomes and experiences for service users is a key enabler of interprofessional teamwork [ 20 , 21 ]. As Cameron et al. [ 22 ] found, expressing the benefits of joint working in terms of client outcomes/experiences helps staff to recognise that they need to work together to achieve these.

This paper focuses on the development of a framework for gathering and using service user feedback to improve integrated working between health and social care staff. Named SUFFICE (Service User Feedback Framework for Improving integrated CarE), the framework was developed at the request of health and social care organisations in a city in the North of England, who recognized their need to understand how service users were experiencing their local efforts to improve coordination and integrated working across the city and respond to those experiences. In the remainder of this paper we detail the methods used to develop the framework and describe the contents of the framework.

Developing the framework

In early 2012 the local vision for integration in our study site proposed that General Practitioners (GPs), health workers and social care staff would work side-by-side in close knit teams, identifying levels of risk, sharing information and taking a joint approach to supporting older people and those with long-term conditions. One of the first strands of work was the co-location of health and social care staff into 12 ‘integrated neighbourhood teams’, each of which served a specific geographical area. Teams were set up over a 12 month period between February 2012 and February 2013. These teams were chosen as the focus for our framework because they were seen as a particularly important element of the local integration effort, were a relatively well-defined intervention which could be distinguished from the usual ways of working, and offered a forum to engage staff in improving integrated working by reflecting on service user feedback. We were asked to design the framework in early 2013.

The overall aim of our work was to design a practical and user-friendly framework which could be used by those commissioning and delivering integrated health and social care services to understand and respond better to the experiences of service users and their carers. The expectation of those who were setting up the teams was that they would develop and evolve over time. This led us to select developmental evaluation approaches as the basis for our work since these aim to support the development and adaptation of interventions in dynamic environments by focusing on the co-creation of useful and practical evaluation tools [ 23 ]. Our approach meant that we worked closely with staff from relevant health, social care and service user organisations throughout the project. This included establishing a project management group which included representatives from the research team and from local health, social care and voluntary sector organisations. This provided a forum for reporting progress back to the organisations who had requested the framework, and ensured that the framework itself would be fit-for-purpose.

Phase 1: understanding and uncovering expectations about integrated care experiences and practices

We divided the project into several phases. In the first phase we focused on understanding service user experiences of and expectations about integrated care and what effective interprofessional teamworking looks like. We operationalised these as two inter-related questions to help us better communicate our focus to our local partners: ‘What experiences can we expect integrated working to deliver for service users?’ and ‘How should we expect integrated neighbourhood teams to work together?’

In line with our developmental evaluation approach, our overall aims in this phase of the work were to determine the type of service user feedback that would be useful for developing integrated working, the type of activities that integrated teams could be encouraged to engage in, and develop a shared understanding (with our local partners) of how integrated neighbourhood teams could improve service user experiences of care.

We undertook three activities to enable us to answer these questions. First, discussions with our local partners led us to identify two initiatives (one local and one national) to develop outcome frameworks for integrated care. The local framework was based on interviews with service users and staff about what they wanted and expected from local integration efforts [ 24 ]. The national initiative was undertaken by National Voices (a coalition of health and social care charities in England) and involved interviewing and working with service users to produce narratives of person-centred, coordinated care [ 25 ]. We used both of these sources to develop initial lists of service user experiences and teamworking attributes and practices which could be associated with integrated care.

Second, we conducted two scoping reviews. These were specifically requested by our local partners in order to help them understand the current knowledge base on integrated working. Our first review focused on published accounts of service user’s experiences of integrated care. Our second review focused on published accounts of how staff from different organisational and professional backgrounds work together and the markers of effective teamworking. Our search strategies and results can be seen in Table  1 .

Table 1

Scoping review search criteria and results

Two team members (VW and LP) read the papers which met our inclusion criteria in full and worked together to extract and summarise service user’s experiences of integrated care and the features of integrated teamworking and develop these into two sets of short statements. We also used the results of the reviews to produce short documents for our project partners which summarised the knowledge base in relation to these aspects of integrated care.

Our third activity involved conducting interviews with 15 local commissioning and service provider managers, including members of the local Integrated Health and Social Care Board. We decided not to interview service users since we were confident that the work undertaken locally and nationally adequately captured service user expectations about integrated care and we did not wish to overburden local service users. Written consent for the interviews was given by all participants. We asked interviewees what they hoped that service users would say after receiving care from an Integrated Neighbourhood Team and what the teams would need to do to achieve those positive experiences. Interviews were recorded and transcribed in full. Two team members (VW and LP) categorized interview material into ‘service user experiences’ and ‘team activities’, summarized it (by paraphrasing interviewees key points) using the framework function in NVivo 9 (QSR International) and used the resulting framework matrix to identify the service user experiences and team activities discussed by our interviewees.

Two team members (VW and LP) compared the service user experiences which we had identified from the local and national outcome frameworks, scoping reviews and interviews. We discussed, grouped and summarised these to develop a final list of six service user experiences associated with integrated care. We used the same approach to develop a list of 15 attributes and activities associated with integrated teamworking.

Phase 2: developing a logic model

The second phase of the project involved linking the service user experiences and team activities and developing a series of ‘logic models’ [ 23 ]. This type of model is widely used in program evaluations as a way of helping program developers to clarify their goals and planned activities and for visualizing the linkages between them. Since our overall aim was to develop a framework which would enable staff working in the neighbourhood teams to explicitly understand the links between service user experiences and their activities and working practices (and make any necessary changes), we judged that logic models could be a useful part of this framework. The logic models were also designed to act as a tentative roadmap for service providers and commissioners by showing how the Integrated Neighbourhood Teams were designed to work and where any adjustments needed to be made. Recognising that it was important to co-produce the logic models with staff who had a more detailed view of the Integrated Neighbourhood Teams, we held a 2 h workshop with local commissioning and operational managers and a service user involvement specialist. During the workshop we worked with these managers to group together the team activities which were most likely to influence each of the six service user experiences and to arrange them into a logical chain of events. We used the outputs from this meeting to produce draft versions of the models which were circulated to our project collaborators for further comments and adaptation.

Phase 3: devising tools for gathering experiences of integrated care

The third phase of the project involved devising tools for collecting and analysing service user experiences. Some of our project partners originally envisioned that survey tools could be used to collect service user experiences but after a number of group discussions about the difficulties of administering and collecting surveys from the frail older adults who were most likely to be receiving care via an Integrated Neighbourhood Team [ 26 ] and the limitations of survey data for understanding individual experiences, we decided to focus on capturing rich descriptions of people’s experiences in their own words using a qualitative approach [ 27 ].

We recognised that qualitative approaches have the potential to generate a vast amount of data which can be difficult and time-consuming to analyse. This had the potential to clash with our overall aim of developing a practical framework which could be used by staff with relatively little research experience. One team member (GF) therefore reviewed a range of academic and grey literature about the collection and analysis of qualitative data by lay researchers and service users [ 28 – 30 ] and identified a number of key principles. These included dividing the data collection and analysis process into a series of clear and well-defined tasks, developing a topic guide flexible enough to meet the needs of interviewees, using a simplified coding framework and developing creative ways of presenting findings that may help to overcome resistance from staff members. We drew on these principles and our own experience and knowledge of qualitative analysis techniques to devise a comprehensive series of data collection and analysis tasks, a procedure for working with interview data direct from audio recordings [ 31 ], a simple analysis codebook [ 32 ] and a procedure for comparing and summarizing service user experiences into a single narrative story. As with the previous phases, we worked closely with our local partners in developing these materials and approaches.

Phase 4: devising tools for developing service improvement plans

The final phase of the project focused on devising a procedure to enable the Integrated Neighbourhood Teams to reflect on and develop their teamworking practices by reflecting on the experiences of their service users. To develop the procedure we drew on two main resources. In line with our overall emphasis for the project, the first was developmental evaluation methodology [ 23 ], which focuses on the innovative use of formative feedback (and other resources) to improve and develop an ongoing intervention (such as integrated neighbourhood teams). The second was NHS service improvement resources [ 33 ]. As well as focusing on facilitating collaborative problem-solving, understanding and mapping current practices and planning activities to improve those practices, many of these have also been developed and tested in NHS contexts and were familiar to most of our partner organisations. In collaboration with our project partners, we used these sources to devise a structured protocol which would enable teams to reflect on the experiences of their service users, identify how their work impacts on those experiences and develop a clear service improvement plan to address any identified issues.

Between January and April 2014 the SUFFICE framework was implemented with three Integrated Neighbourhood Teams by our partner organisations. They took full responsibility for implementing the framework (including collecting and analysing the service user feedback data and arranging service improvement planning meetings). In the interests of data protection and brevity, we cannot present the results of the work conducted by our partner organisations or comment on the implementation of the SUFFICE framework.

In the following section we describe the contents of the SUFFICE framework in more detail.

Suffice framework materials

In this section we describe the SUFFICE framework materials in the order in which they were developed. We begin by presenting the outputs of phases 1 and 2—our models of the expected linkages between integrated care experiences and practices. We then present the tools for gathering integrated care experiences (phase 3) before detailing the tools for developing service improvement plans (phase 4). In practice, the SUFFICE materials are designed to be used in a different order to that in which they were developed, and so we round the section off with a flow diagram showing how the SUFFICE framework is designed to be operationalised (Fig.  2 ).

Using the SUFFICE materials in practice

Logic models: linking integrated care experiences and practices

From our literature review, interviews and review of previous outcome frameworks we identified six service user experiences which are expected to arise from an increase in integrated working. To make them readily accessible to a range of audiences, and in line with the influential work undertaken by National Voices to produce coordinated care narratives [ 25 ] and advice from our project partners, we expressed these as a series of ‘I’ statements. Four statements are related to a nominal service users’ journey, from assessment through to receipt of care from a new service, whilst the other two relate to care processes in general.

• When my needs are being assessed and my package of care is being put together (or altered) I do not keep having to say the same thing to lots of different people.
• When the care and support I need has been agreed, I receive it in an efficient and timely manner—things happen when they are supposed to.
• When my needs change or things go wrong I know who to contact/who to go to/what to do—I am not bounced around the system.
• When I need care and support from a new service (e.g. hospital), they already know what my needs are and who else is involved in providing me with care and support.
• My package of care and support is focused on me and my needs—my opinion is listened to and respected.
• I know about the range of formal and informal support that is available to me.

From our literature review and interviews we identified 15 markers of and activities associated with integrated teamworking.

• Teams have networks across a number of agencies and work closely with those agencies.
• Team members are able to work across geographical boundaries.
• Team members understand one another’s background and culture.
• Teams offer a full range of support. They are able to access and signpost to specialist and community support.
• Teams have a shared identity in which all team members are engaged.
• Teams clearly identify one case manager for each service user.
• Teams identify who is best placed to do an assessment or care planning.
• The team carries out one joint comprehensive assessment.
• The team shares information with other agencies about individual service users.
• Staff are able to blur boundaries and share work with each other.
• Teams are comfortable working closely together.
• Teams have regular meetings to discuss shared cases.
• Teams respond quickly to service user need.
• Team members are focused on their service user’s needs.
• Teams are able to make efficient use of time.

During the workshop and subsequent discussions with local managers, these sets of expectations were adapted and linked together to produce a series of six ‘logic models’ (one for each expected service user experience). Each model includes team activities (shown in rounded boxes), team-level outcomes (shown in brackets) and the expected service user experience (shown in a coloured box on the right of the diagram). Dotted arrows link many of the team activities and outcomes to demonstrate the expected logical sequence of events. An example of a logic model can be seen in Fig.  1 below. All of the logic models can be found in Additional file 1 : Appendix S1.

‘Assessment’ logic model. A model showing the expected logical progression and linkages between team activities (shown in rounded boxes ), team-level outcomes (shown in brackets ) and service user experience (shown in a coloured box on the right of the diagram)

The main purpose of the logic models is to help facilitate structured reflection and the development of service improvement plans by team members. This led us to include several additional elements in each logic model. First, to facilitate structured reflection on the part of the teams, each activity and outcome is expressed from the perspective of the team (‘we’ statements). Second, each activity and outcome also includes a box for team members to indicate whether they feel that each of them occurs in their team. Finally, empty boxes are included so that they can also suggest other important activities not represented in the model.

Tools for gathering and analysing service user experiences

Since we were interested in gathering the experiences of service users in their (or their carers’) own words, the data collection tools are not driven by the six expected experiences represented in the logic models. Instead, we devised a semi-structured interview schedule divided into three sections, as shown in Table  2 . The full interview schedule is available in Additional file 2 : Appendix S2.

Table 2

overview of the service user experiences interview schedule with examples

The six expected service user experiences were used to drive the analysis plan, which is divided into three phases.

• Familiarisation and identifying relevant material . This phase involves listening to an audio recording of each interview and noting the content using a timed grid. The aim of this phase is to identify the points at which various topics are discussed and start to identify material which relates to the six expected service user experiences.

Table 3

Extract from the service user experiences analysis codebook

Table 4

Table for comparing and synthesizing service user experiences

To enable these key points to be communicated to a range of audiences and used as the basis for developing service improvement plans, we devised a mechanism for constructing composite stories based on the experiences of several service users. Stories are increasingly being used as a way of communicating service user experiences and have been shown to be a powerful catalyst for service redesign and change by inspiring understanding and empathy, and encouraging service providers to listen, learn, and act upon what they are told [ 34 , 35 ]. The mechanism we developed focuses on producing separate stories to illustrate each of the six service user experiences. Our materials include a simple template and style guide which make it clear that whilst the decision about how to weave together the key points rests with the analyst (which may include embellishing contextual details and circumstances), the focus of the story should remain on the key points which emerged from the analysis.

Tools for structured reflection and planning

We developed a structured protocol to guide teams through the process of developing a service improvement plan over the course of one or two meetings. The protocol includes four separate stages, drawing on the composite stories of service user experiences and the logic models, which culminate in an agreed service improvement action plan. The protocol also includes instructions about selecting a facilitator and scribe for the group discussion and someone to take responsibility for coordinating the implementation of the agreed service improvement plan. An overview of the four stages and example text from the protocol is shown in Table  5 below. The complete service improvement protocol can be seen in Additional file 4 : Appendix S4.

Table 5

An overview of the service improvement protocol

The complete SUFFICE framework is shown in Fig.  2 below, which demonstrates how the materials we have described fit together in practice.

In this paper, we have presented an innovative framework for gathering and using service user feedback to inform ongoing service improvement in integrated care.

The SUFFICE framework is important in two respects. First, gathering and evaluating service user experiences are neglected aspects of the integrated care landscape, with the focus tending to remain on idealised descriptions of integrated care from an organisational perspective. The SUFFICE framework aims to rebalance this by providing a mechanism for producing realistic composite stories which represent the voices and experiences of those receiving integrated care services. Second, enabling teams of staff to develop a shared sense of purpose focused on the needs of their service users is a crucial aspect of improving integrated working between health and social care staff. The SUFFICE framework provides a mechanism for teams to make plans for improving integrated working which have service user experiences at their heart.

Strengths and limitations

• The main strengths of this study are its collaborative design, its focus on developing a practical tool with real-world application and its focus on service user experience.
• The main limitations of this study are its focus on one geographical area in the United Kingdom and limited data on how the framework was implemented over time.

Authors’ contributions

VW led the conception and design of the project, reviewed the teamworking literature and led the development of the logic model and service improvement protocol. She has also taken responsibility for drafting and finalising the paper. LP reviewed the service user and integrated care literature, designed, implemented and analysed the interviews with managers and contributed to the service user interview and analysis plan and the service improvement protocol. She contributed to the first draft of this paper and has been involved in revising this version for publication. GF contributed to the service user interview and analysis plan and the service improvement protocol and supported our partner organisations to implement the framework. He has been involved in drafting and revising this paper for publication. All authors read and approved the final manuscript.

Acknowledgements

The authors would like to acknowledge members of our project advisory group (Emily Brown, Rachel Cooper, Susanne Cox, Allan House, Mussarat Khan, Hailey Matheson, Paul Morrin, Rhona Neilson) and their respective organisations (Leeds Community Healthcare NHS Trust, Leeds Older People’s Forum, West Yorkshire & Bassetlaw Commissioning Support Unit, Leeds Institute of Health Sciences and Leeds City Council). We would also like to thank the other representatives of our partner organisations who participated in interviews and workshops to help us to develop the SUFFICE framework.

Competing interests

The authors declare that they have no competing interests.

Data sharing statement

No clinical data was collected during this project, and no unpublished data are available to other parties.

This work was part-funded under the National Institute for Health Research Collaborations for Leadership in Applied Health Research and Care (NIHR CLAHRC) for LYB (Leeds, York and Bradford)—a collaboration between two universities, the NHS, and Social Services. The views and opinions expressed in this paper are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health.

Ethics approval

Ethical approval for the development of the framework was granted by the University of Leeds Medicine & Health Ethics Committee (SoMREC/13/015). Written consent was given by all participants.

This project was supported by the National Institute of Health Research (KRD/012/001/006) and by the Leeds South and East Clinical Commissioning group.

Abbreviations

Additional files.

10.1186/s13104-016-2230-0 SUFFICE logic models. (345K, pdf) 10.1186/s13104-016-2230-0 SUFFICE service user interview schedule. (166K, pdf) 10.1186/s13104-016-2230-0 SUFFICE analysis template. (213K, pdf) 10.1186/s13104-016-2230-0 SUFFICE service improvement protocol. (364K, pdf)

Contributor Information

Vicky Ward, Phone: 0113 3430848, Email: [email protected] .

Lisa Pinkney, Email: [email protected] .

Gary Fry, Email: [email protected] .

The Moscow Social Space: Features and Structure

• URBAN DEVELOPMENT
• Published: 26 December 2019
• Volume 9 , pages 383–395, ( 2019 )

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• O. I. Vendina 1 ,
• A. N. Panin 2 &
• V. S. Tikunov 2  

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The article presents the results of a study on analyzing intracity differences in Moscow. The concept of “social space” as a dual reality is used as the theoretical framework of the work, derived simultaneously from social relations and properties of an urban area. In the study, heterogeneous quantitative indicators were used for each of Moscow’s 125 districts. Sources of information are a census; current socioeconomic, demographic, migration, and electoral statistics; real estate data; surveys of residents in districts of the city. Based on these, the indices of the ethnic mosaic, demographic shifts, development of the urban amenities, people’s moods, and the reputation of place are calculated; districts are categorized by typology, taking into account factors of location and territorial proximity; maps are compiled, reflecting different dimensions of the city’s social space. Comparative analysis showed that the rather egalitarian social space of Soviet Moscow in past years has become more fragmented and polarized: the boundaries of differences have become more marked. The increase in unevenness has led to tangible divisions in improvement of the urban environment, saturation of the urban well-being of some districts, and the impoverishment of others. The authors conclude that, in order to reduce the risks of urban segregation, it is necessary to strengthen the coherence of the urban space and social environments, and to bring the level of diversity of the urban environment in line with that of the population of Moscow districts. Such policies and activity are most required where rapid growth of ethnocultural diversity occurs against a lack of development, relative transport isolation of districts, and social exclusion.

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The study was carried out at the Russian Presidential Academy of National Economy and Public Administration with the financial support of the Russian Science Foundation (project no. 15-18-00064 “New Approaches and Methods for Regulating Ethno-Political Relations in Russia’s Largest Urban Agglomerations”). Analytical part of the research was fulfilled within the framework of the state-ordered research theme of the Institute of Geography RAS, no. 0148-2019-0008 (“Problems and Prospects of the Russia’s Territorial Development in Terms of its Unevenness and Global Instability”).

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Vendina, O.I., Panin, A.N. & Tikunov, V.S. The Moscow Social Space: Features and Structure. Reg. Res. Russ. 9 , 383–395 (2019). https://doi.org/10.1134/S2079970519040117

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Received : 13 February 2019

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Accepted : 11 July 2019

Published : 26 December 2019

Issue Date : October 2019

DOI : https://doi.org/10.1134/S2079970519040117

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