The place of service-user expertise in evidence-based practice

Abstract

Summary

This article considers the place of service-user knowledge and expertise within an evidence-based practice perspective. It makes a strong argument that client involvement is a core principle of Sackett et al.'s foundational approach in evidence-based medicine. In so doing, it draws on research on service-users' perceptions and experiences of evidence-based practice.

Findings

For service users, evidence-based practice lacks relevance and trustworthiness unless it explicitly factors in the expertise of service users themselves. Evidence-based practice is seen to have merit as a tool for enhancing accountability, but service users see a role for themselves at individual and representative levels in the process of evidence-based practice. They place a high value on the expertise derived from lived experience, and recognise that fluctuations in capacity and changes in circumstances of many service users require a flexible approach to their participation in decision making. A pragmatic approach to the conceptualisation of evidence is recommended, which not only maintains scientific rigour inherent in evidence-based practice but also more strongly emphasises the process of analysing evidence appropriate to a particular individual's preferences and circumstances.

Applications

For human service practitioners, this study emphasises the need to develop professional skills in assessing the capacities, circumstances and preferences of clients and analysing and applying evidence for practice in ways that conform to a client-centred approach. It also indicates a need for researchers and practitioners to recognise and value service-user expertise.

Keywords

Social work evidence-based practice service-user expertise mental health homelessness

Introduction

This article examines the place of service-user expertise in evidence-based practice. It makes a strong argument that client involvement is a core principle of Sackett et al.’s foundational approach in evidence-based medicine. This article reports on a study that examined the ways in which service-users perceived evidence-based practice within the human services. A series of interviews and focus groups with users of homelessness (n = 11) and mental health services (n = 11), supplemented by service-provider interviews and policy analysis, revealed both scepticism and optimism about the potential of service-users’ experiences of human services to enhance the receptivity of evidence-based practice to client needs and interests; scepticism where evidence-based practice was seen as yet another authoritative, top-down model; and optimism where evidence-based practice was conceived as a process or tool that would recognise the value of service-user expertise as a type of ‘evidence’. The resounding message from service users was that evidence-based practice had to recognise their unique lived-experience knowledge. However, their experience of evidence-based practice was complicated by the complex and ever-changing nature of their capacities and circumstances. This article optimistically seeks a better fit between evidence-based practice and service-user expertise within homelessness and mental health services, considers the challenges this might involve, and suggests how the seemingly oxymoronic notions of service-user expertise and evidence might meld together to shape more accountable, transparent and empirically supported practice and policy making.

While the term ‘consumer’ has gained prominence within much of the policy and literature pertaining to participation in Australian human services, and was a term commonly used by the respondents in this study to describe themselves, it has not been used in this article because it closely aligns with neoliberal conceptions of service use, whereby the consumer exerts market power, a conception which this study sought to question. As such the term ‘service user’ has been used, because this particular study examined people's use of a range of services. The term ‘consumer’ is only used where a particular respondent or body of literature used this terminology.

Literature review

Early definitions of evidence-based practice derived from evidence-based medicine, where Sackett et al. (1996) described the process as the:

… conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients. The practice of evidence based medicine means integrating individual clinical expertise with the best available external clinical evidence from systematic research. (p. 71)

Their definition proved fundamental to ensuing debates within the social sciences because it laid out some of the key characteristics of the model promoted by many evidence-based practice supporters within the human services. Importantly for human services practitioners, this definition indicated that (in and of itself) evidence did not provide the answers; it had to be applied judiciously and appropriately by professional experts taking client interests into account. Second, the description of the best available evidence included a range of evidence types and was not restricted to randomised controlled trials, although Sackett et al. (1996, 2000) emphasised the importance of systematic and rigorous research. The best available evidence was that most applicable to a particular client situation. Third, they described evidence-based practice as a client-focused model in which the clinician's search for, and critical appraisal of, evidence was driven by the individual client's situation, values, preferences and interests. They explicitly stated that evidence-based practice was not, nor should it be used as, a ‘cookbook’ (p. 72) approach to practice or an authoritative model. Despite this oft-cited definition of evidence-based practice and its formative contribution to current understanding, fears about its value continue ad infinitum.

Haynes, Devereaux and Guyatt's (2002) model has been cited to demonstrate that clinical professional expertise requires engagement with three domains: client values and preferences, clinical circumstances as judged by professional clinicians and research evidence (Gambrill, 2006b; Mullen et al., 2005). This model emphasises that evidence-based practice is a more complex process than simply identifying which practices can be substantiated through research and highlights the individualised nature of the process.

Advocates of evidence-based practice within the social sciences were those who were able to reconcile the approach with notions of client rights, and empowered or informed decision- and policy-making processes. Evidence-based practice was seen as part of the practitioner's commitment and accountability to the client. Gambrill (2006a, 2006b) was a strong proponent of evidence-based practice within social work because she conceptualised it as a client-centred process. She acknowledged the struggle to define evidence-based practice that had taken place, asserting that, by prioritising ethics, it was clear that a model that was broad in its definition and not overly prescriptive was most suited to social work. This process was seen to reduce authoritarian decision making and to promote transparency by being open with the client about the gaps and limitations in evidence.

Shlonsky and Gibbs (2006) similarly emphasised its process orientation, claiming that concern around its potential to be a top-down, prescriptive approach was unwarranted. Like Gambrill, they viewed evidence-based practice as a process that began and ended with the client. For them, proper consideration of client values and preferences and professional expertise should be applied in conjunction with the practitioner's interpretation of best available evidence.

Pawson (2006) critiqued the contemporary approach to evidence-based policy making because its evidence hierarchy with ‘gold standard’ randomised controlled trials, systematic reviews and meta-analysis at its apex, could not account for the complexities and intricacies of human services settings to which the evidence must be transferred. His analysis spoke to the crucial and often convoluted relationship between practice and policy making, oversimplified in most approaches to evidence-based practice. He noted that policy was delivered through ‘active interventions to active subjects’ (Pawson, 2006, p. 27) in domains of policy making and practice that were inextricably linked. Ultimately, policy ambitions could not be realised without consideration of the complex and often highly individualised circumstances of the service user.

Glasby and Beresford (2006), who were not sympathetic toward evidence-based practice, advocated a model of ‘knowledge-based practice’ (p. 281) and urged a rethinking of what constituted valid knowledge for practice. Their proposed model acknowledged the value of quantitative ‘gold standard’ experimental research but also allowed for practitioner expertise and service-users’ and carers’ experiences. Importantly, they proposed key strategies for addressing concerns relating to evidence-based practice, namely, its inability to reflect properly the context for individuals and to draw on the full breadth of expertise, experience and evidence applicable to each service user.

In the field of social work, Plath (2008) suggested four distinct theoretical influences on evidence-based practice: positivism, pragmatism, politics and postmodernism. The positivist approach was seen to favour the ‘gold standard’ hierarchy of evidence in which research directs practice, while pragmatists prioritised the usefulness and relevance of evidence given the ‘symbiotic relationship between research and practice’ (Gray, Plath & Webb, 2009, p. 53). The political interpretation focused on the strategic usefulness of evidence as a tool for lobbying and advocacy, while postmodernism emphasised the factors shaping perceptions of evidence as a discourse contributing to interpretations and understandings of the meanings of experiences and the roles of professionals.

These diverse conceptions of evidence-based practice demonstrate that at the individual level of client-practitioner interaction, the service-user's preferences, values and circumstances shape the application and interpretation of evidence. However, this study demonstrated that, for many service users, and particularly users of mental health services, evidence-based practice was perceived as a top-down model, particularly one which reinforced medical interpretations of mental illness.

Service-user perspectives

Methodology

A case study methodology was used to trace the relationship between policy, practice and service-users' lived experience of mental health and homelessness services. The study examined the intentions and priorities of current Australian policy and the way in which it shaped service-users' formal engagement within these key human services sectors. It then explored the ways in which service users valued and engaged with evidence and participated at individual and representative levels in shaping services.

There was little already known about the Australian service-user perspective on EBP and, given the limited implementation of EBP within Australia, it was difficult to measure current practices, attitudes and knowledge. The study was thus intended as a starting point to identify the options for service-user involvement in EBP and in-depth perceptions of the relationships between evidence and participation. Yin (2009) suggested the case study approach is useful for in-depth research that seeks to determine the ‘how’ and ‘why’ of social phenomena, where no control over behavioural events is required, where the focus is on ‘contemporary events’ and where it is important to examine the phenomenon in context (p. 8). This study sought to examine the experiences of service users within the contemporary context of Australian human service policy and implementation, exploring how EBP and participation impacted on service users and why service users engaged in, or disengaged from, particular elements of EBP and participation. A multiple case design sought to contrast two comparable groups of service users, but it is important to note the limitations of generalisability that apply to such a case study methodology. The study deliberately examined service-user groups likely to be among the more marginalised within Australian human services. In so doing, it offered interpretations and tested theoretical models that might resonate with the experience of other human service sectors, especially those targeting marginalised groups or individuals. However, it was not intended as a representative sample or to ‘enumerate frequencies’ (Yin, 2009, p. 15).

The two case studies were purposively selected to compare and contrast the mental health sector, in which service-user involvement was well entrenched, with the homelessness sector, where it was in the early stages of development. Within each the homelessness and mental health sector case study, key federal, state and regional policy documents were analysed to understand the context for evidence-based practice and policy-informed participatory strategies for service-user involvement. In-depth interviews were then conducted with 11 homelessness service users, 11 mental health service users and a sample of service providers to establish consistencies and/or tensions between service-users' and providers' understandings of their involvement in an evidence-based practice framework. Preliminary findings were presented to small focus groups of service users (n = 7) to test their relevance and workability. Respondent names and identifying characteristics were de-identified to protect anonymity.

The service users interviewed for the study were recruited through meetings with service-user groups and advertisements in newsletters and bulletins of service-user groups. As such, most of the respondents were actively involved in representative service-user roles, as members of advisory committees, peer support workers and advocates, and in paid service-user roles (in the mental health sector). Respondents also described their involvement in terms of personal interactions with family, friends and colleagues, in which they sought to challenge stereotypes and reduce stigma associated with either homelessness or mental illness. Respondents had used a wide array of services, including government and non-government services, to address concerns related to health, housing, finances, substance addiction, mental illness and recreation/socialisation. As such, the range of human services considered in this article is deliberately broad.

The people who participated in each case study had all encountered experiences of being marginalised and excluded from full participation in society. Therefore, it was important that the input of each respondent was valued. Participants had an opportunity to respond to the initial findings of the study through participating in a focus group, or by submitting a written or verbal response to the research summary. The research was approved by the university's Human Research Ethics Committee.

Homelessness service-user expertise

The users of homelessness services interviewed drew strong connections between service-user involvement and service-user knowledge, noting the value of the unique perspective of the lived experience of homelessness. One service user stated:

The homeless people themselves are the experts. And I know a lot of people will say, ‘But you’re part of the problem, how can you be part of the solution?’ Well no-one understands the problems better than a homeless person. (Paul, user of homelessness services)

Service users Paul, Jasmine, Penny, Jane, Greg and Rodney made clear distinctions between the type of knowledge gleaned from academic study (the evidence-based practice approach) and lived experience. A ‘textbook’ approach could not provide the level of understanding required to address issues surrounding homelessness. User of homelessness services, Jasmine argued, ‘We’re not just reading from a textbook or reading papers or anything. So, like, the guys know what goes wrong and what goes right’. Though academic knowledge was not disregarded entirely, a collaborative research approach in which researchers, policymakers and practitioners worked closely with service users to incorporate personal knowledge in their practice and policy-making decisions was seen as crucial. Research-based and practical knowledge were seen as complementary, although academic or professional knowledge was not considered to be useful or accurate without some level of service-user input to inform and shape it.

Eliciting service-user knowledge and expertise was also seen as an important means of engaging with homeless people and allowing them to open up and feel comfortable in service settings. Sue suggested being a middle-aged woman with many years experience of homelessness had often made her feel more knowledgeable than the younger, inexperienced staff at some of the homelessness services. She had avoided using a number of services where she felt the staff lacked an appropriate level of insight and knowledge. Interestingly, service user Greg had attempted to apply for work at an accommodation service, but had been discouraged because his experience of homelessness was seen to be inappropriate for the role. He saw his experience as enhancing his knowledge and ability to work with homeless clients. Unlike the mental health service sector, the homelessness service sector had not generally moved towards professional service-user roles and there appeared to be a distinction between professionalism and lay or personal experience. Service users Jane, Steve and Mike suggested human service professionals should undergo training provided directly by service users as a compulsory part of their formal education to develop their sense of empathy and deepen their understanding of the complex issues they sought to address. Service users Isabelle and Jane indicated only someone who had used the human service system could really appreciate its faults and understand what needed to be changed, suggesting service users ‘know how to navigate it; they know what's wrong with it’ (Jane, user of homelessness services).

Mental health service-user expertise

As with users of homelessness-related services, those respondents within the mental health case study saw their unique knowledge gleaned from living the experience of mental illness as a source of special and valuable expertise. Many saw their sharing of their knowledge and insights with fellow service users as an important tool in recovery. For example, user of mental health services, Tara said ‘most consumers will tell you “well actually the best thing about being in hospital was talking to the other consumers on the verandah and that's how I got well”’. For Sarah and Elizabeth, in conducting their own research into schizophrenia in search of information about their illnesses, they had been heavily influenced by accounts of the experiences of other service users. Sarah described how, when she looked for books or articles on the internet, she was drawn to those written by people who had experienced mental illness. While Elizabeth had shied away from peer-support forums, because she was not comfortable spending significant amounts of time with other mentally ill people, she noted she nevertheless felt an ‘affinity’ with people who had experienced mental illness and shared their knowledge. This encouraged fellow sufferers to speak freely and develop an understanding of one another. In her work as a consumer consultant, Tracey would tell clients immediately she was a fellow service user, because this was an effective way of breaking down barriers and establishing a ‘connection’. This came, she said, because consumers felt a fellow consumer would understand them and their experiences better than other staff. Despite the fact that service-user representatives and paid service-user workers may have experienced different types of mental illness or had different experiences of the system than some of their peers, their insight and capacity to engage with fellow service users was considered superior.

Greta saw ‘lived experience’ as a highly valuable but contentious source of expertise to be treated with great care. A significant part of her work as a service-user advocate was to gain recognition of the importance of this lived experience in treatment and support decisions, but also important was training, education and skill development. She cited examples where service users had been placed on committees to share their experience-based knowledge but where, because they were poorly trained and lacked support in their role, they had broken down and appeared fragile, reinforcing stereotypes of the helplessness of people with mental illness. Greta was mindful of the way in which individuals’ stories could be taken over by mental health workers and researchers and retold and manipulated in contexts where individuals lost ‘power’ over their stories. To retain power, she was very selective about sharing her story with professionals or in public forums. In contrast, other interviewees made their stories publicly available, seeing them as a source of knowledge and shared expertise. One service user had written and self-published books about mental illness, which told of her personal journey through mental illness and the strategies that had worked in dealing with mental illness. A number of participants had spoken publicly about their experience of mental illness at conferences, community events and professional networking meetings. For these service users, sharing their stories and suggestions enabled them to support other service users in making informed, insightful decisions, enhancing workers’ understandings of mental illness, building better strategies for working with people with mental illness and breaking down public stigma. These approaches to the dissemination of service-user expertise highlighted its personal nature and the complexities involved in working with a type of knowledge stemming from lived experience.

For Amanda, it was crucial for service-users’ insights to contribute to the development of treatments and support mechanisms, especially regarding the side effects of medication. If clinicians did not understand the effects of medication, they could not meet the patient's needs or ensure their compliance with treatment regimes. She knew of a number of people who had not complied with medicine regimes due to the significant weight gain they had experienced as a side effect, noting that until the patient's expertise in the experience of that side effect was acknowledged, the therapy was unlikely to work. Claire observed how ‘the insider's view of how it feels’ sometimes challenged professional egos and practice wisdom. Reflecting her lived-experience perspective, she believed ‘no-one can ever understand, really, how it feels, unless they’ve gone through that experience’ (Claire, user of mental health services).

Value of evidence to service users

The experience of service users across both case studies was a long way from the idealistic notions of evidence-based practice theorised by Gambrill (2006b). Some proponents perceived an emerging bottom-up demand, whereby human service users expected practitioners to be up-to-date and familiar with the latest and best research. However, there has been a longstanding distrust of professionals in the self-help, service-user movement with users doing their own research rather than relying on, or trusting professional wisdom or expertise (Shaw, 2002; Shlonsky & Gibbs, 2006). This type of bottom-up demand was not evident in this study. For some service users, the lack of a bottom-up demand for evidence-based practice was due to a lack of skills, capacities and resources to generate a demand. For others, it did not include the types of expertise and evidence that were meaningful to them. Research participants in both case studies were generally unclear about what was meant by evidence-based practice and what constituted evidence. However, they did expect practitioners to be up to date with the latest research and to shape their practice accordingly.

The hierarchy of evidence is a fundamental, but also a contested, tool. It is fundamental because it is via the application of the hierarchy of evidence that practitioners are able to critically appraise bodies of evidence. It is via the hierarchy of evidence that evidence-based practice distinguishes itself from knowledge-informed practice, based on a wide array of information sources to guide decision making, including service-user experience. The classification of rigorous and reliable evidence into a hierarchy is a defining feature of evidence-based practice. However, the notion of best available evidence implies an evidence continuum with reliable gold standard evidence at one end and practice wisdom at the other (Sackett et al., 1996).

The notion of service-user expertise has been poorly conceptualised within evidence-based practice generally and within the hierarchy of evidence in particular. While some models of the hierarchy include service-user opinion on the lowest rung as a type of expert opinion (Fraser, Richman, Galinsky & Day, 2009), for others the question of client values, interest and expertise continues to pose concerns for the evidence hierarchy (Davidson, Drake, Schmutte, Dinzeo & Andre-Hyman, 2009; Gould, 2006). This is perhaps central to evidence-based practice's failure to gain traction within the human services sector and align effectively with principles of service-user participation. In response to the failure for positivistic notions of evidence to effectively consider the complexity and diversity of social care services in the mental health sector, Gould (2006) proposed a framework that encapsulated both qualitative and quantitative approaches to knowledge, with respect to both highly individualised and population-based experiences. Within such a framework, there is a place for service-user expertise at a representative (general) level and also in respect to individual experiences, while recognising that both quantitative and qualitative methods are useful, depending on the research question.

Service users in both case studies saw the knowledge gleaned from the lived experience of mental health and homelessness as a unique and highly valuable type of expertise or evidence that should inform practice and policy decisions at all levels. While some reservations were expressed about the potential for service-user expertise to be misconstrued to support individual and sometimes misguided agendas, most believed real reform to services could only be achieved by drawing on the insight and knowledge of service users themselves, who had a unique contribution to offer.

Service users sought to gain legitimacy for their lived-experience expertise through studying knowledge of their condition. Mental health service users recruited to participate in professional forums were expected to possess high levels of literacy and competency to undertake formal service-user-involvement roles. If their expertise were to be respected, they quickly realised the utility of qualifications putting them on a par with the service providers with whom they worked. Engaging in formal study, as seen with a couple of participants in the homelessness study and with many in the mental health study, was part of the pathway to becoming a professional and serving others so that their own negative experiences would not be repeated. However, it was also a means of addressing the unresolved and problematic, yet potentially transformative power of service-user expertise.

It is perhaps not surprising that individuals considered their own knowledge and experience intrinsic to the decision-making process. But the fact that this notion of service-user expertise emerged so strongly from discussions about evidence-based practice with both service users and providers suggests an untapped resource. Part of this pertains to the right of service users to have their interests, experiences and knowledge respected and validated within evidence-based practice. Part pertains to their progression towards independence and self-reliance as per emancipatory, participatory, service-user approaches (Beresford & Croft, 2004; Sapey, 2004) which, in any way, have become the goal of neoliberal welfare. There was a clear sense across both case studies that research and evidence-based practice and policy making would be more successful if such strategies recognised and engaged with the expertise of service users. At the level of individual interactions with services, Sackett et al.'s (1996) original notion of evidence-based medicine considered evidence in tandem with practitioner expertise and client values and interests. Hence, Gambrill (2006b) saw evidence-based practice as a client-centred process. However, the relationship between evidence-based practice and service-user expertise still seems unresolved. First, misinterpretations of evidence-based practice have seen its focus move towards practices rather than process. It has been misconstrued as those practices which can be shown by research to work, thereby overshadowing professional expertise and client interest as envisioned by evidence-based practice pioneers. Second, evidence-based practice has tools to support the critical appraisal and application of empirical research in practice. Primarily, these are the process of systematic review, which has been the centrepiece of the Cochrane and Campbell Collaborations, and the hierarchy of evidence. These tools help clarify how a policymaker or practitioner might do evidence-based practice. There is no such tool for suggesting how professional expertise or client values might shape or feed into the process. Instead, this is implied as an intrinsic component of the way practice is conducted. However, the clear experience of service users in this study is that the implied and assumed process of marrying the evidence with client values is a very long way from actual practice. In fact, neither evidence nor service-user expertise seemed to have featured strongly in the way mental health and homelessness services were shaped, from a service-user perspective. For service users, the demonstrable absence of evidence-informed practice and policy making was not as problematic as the demonstrable absence of service-user expertise to inform practice.

For those who understood evidence-based practice in accordance with definitions from the literature, there was cynicism about the potential bias of evidence. While the hierarchy of evidence was an attempt to reduce the potential for bias of evidence and maintain rigour, it was seen by some service users and providers as elevating randomised controlled trials and thus limiting agencies' capacity and resources to produce reliable evidence. In the mental health sector, the hierarchy of evidence privileged pharmacological and medical treatments because the organisations seeking to increase uptake of these types of interventions were those able to afford to fund and report on clinical trials. Resistance to the implementation of evidence-based practice in the mental health sector was at least partly related to the perception that evidence-based practice supported a medical rather than a social model of mental health and that the types of processes and strategies associated with recovery were much more difficult to measure or produce evidence for. As such, the trustworthiness of evidence might be enhanced if it could be shown how the hierarchy of evidence was used in tandem with professional and service-user expertise.

Various commentators have identified a growing tendency, particularly in the health field, for service users to be more informed about the issues for which they are seeking assistance, due mainly to the large amounts of information now available on the worldwide web (Powell, Darvell & Gray, 2003; Shaw, 2002; Stilgoe, Irwin & Jones, 2006). But many of the participants in this study had limited access to the internet, hence because internet-based technology was increasing so too were disparities in participation, creating a digital divide.

Users of homelessness-related services did not demand evidence-based practice nor were they able to make any demands on the system. Instead, they had to take what was available to them. Far from demanding that practitioners demonstrate evidence to support their recommended interventions, these service users felt that they were expected to be grateful and compliant to have their basic needs met.

Users of mental health services, however, seemed more involved in their demands for evidence-based practice. In the early stages of their illness and during periods of acute illness, the demand was unspoken: Service users expected that professionals would be well-researched and trustworthy and able and prepared to act in their best interests. However, as service users moved towards what they described as recovery or stability, or as they built their knowledge and confidence regarding their mental illness, and their ability to manage it, their demands upon service providers became more explicit. Through engaging with peer networks, reading, trialling new treatments and techniques, attending conferences and other such activities, many of these service users became savvier in their approach to service use and had expectations of a collaborative, informed approach to decision making. It must also be remembered that mental illness afflicts people from all social and economic strata and levels and types of education and professional experience; this is not a homogenous group (Lammers & Happell, 2003). While not necessarily demanding evidence-based practice per se, respondents in this study wanted a more informed, transparent, accountable and empowering approach to service users, many of whom had ‘done their research’. However, again there was a sense of resignation regarding the limitations of choice in service options.

Therefore, a bottom-up demand for evidence-based practice was not found in this study. Rather evidence-based practice was misunderstood or seen as unsympathetic to service-users' goals and lived experience, discrediting the types of knowledge they saw as important to decision making. There was little capacity to access the resources and information sources that would generate meaningful discussions about evidence. Service users felt that they often, particularly at times of heightened crisis, had little capacity to demand anything of service providers. The notion of a bottom-up demand for evidence-based practice implies a level of collaboration, empowerment and choice that was simply not experienced by most of these service users.

Discussion: Service-user expertise and empirical evidence

The notion that some types of knowledge were more reliable than others was fundamental to the evidence hierarchy. However, the literature demonstrated that explicit and scientific conceptions of evidence had been problematic for the uptake of evidence-based practice in the social sciences. This study confirmed the problematic nature of narrow views of evidence, given the complex needs and personal circumstances of mental health and homeless service users. As already noted, the concept of evidence was poorly understood and there was little consensus on what constituted evidence. Debates on the nature and definition of evidence made little difference to service users in this study who drew on a wide range of information from diverse sources. For them, the knowledge gleaned from their experience as service users and consultants constituted evidence.

Respondents were positive about improving accountability, particularly to those who used services. For example, Paul (homelessness service user) described the way in which greater reliance on research to inform practice might hold agencies accountable for the way in which services were delivered and correct the attitude that service providers or professionals know best. There was thus some endorsement of evidence-based practice as research-informed practice, but professional expertise had to be balanced by service-user expertise. Certainly, it was difficult to argue against practice and policy making based on in-depth analysis of an array of information sources if the alternative were arbitrary decisions based on organisational priorities and preferences.

Evidence-based practice seemed to have become a buzzword or jargon, indistinguishable from prior incantations of ‘best practice’. In short, evidence was meaningless to service users where it did not reconcile with the contribution of service-user expertise. Overwhelmingly, service users sought information and guidance from other service users because they trusted and connected with them and shared ideas, experiences and opinions or expertise.

The process of evidence-based practice includes the relationship between service-user and practitioner expertise and research evidence (Gambrill, 2010; Thyer & Myers, 2011) and this process can and, according to Sackett et al.'s (1996, 2000) original definition, does account for the service-user's values, preferences and interests. Figure 1 highlights the service-user's perspective as the frame for the appraisal of evidence, or within which the process of evidence-based practice takes place. In this model, the service-user's insight, knowledge, values – their expertise – is the lens by which other types of knowledge are either included or excluded. It suggests that before a judgement can be made about the research evidence applicable to a particular circumstance, there is an impetus to understand the service-user's preferences, history, values, aspirations and the environment in which they live to ascertain what is relevant and important for the particular situation. Given that capacity issues may exist, whereby it is not possible for a service user to express these ideas at certain times (and often this may be at the beginning of their service-use journey when they are at their most vulnerable and critical), this information may be gleaned over time, requiring constant re-evaluation of the evidence or through mechanisms such as Ulysses Planning or Management Planning, in which the service user makes decisions with the service provider about preferred treatment during times of good health to be enacted during times of poor health, or using existing records and information (requiring confidentiality and information-sharing protocols across agencies). This type of model, while useful as a heuristic device, oversimplifies what are complex and dynamic circumstances. However, it demonstrates a shift in emphasis, whereby the service-user's expertise is not a component of evidence-based practice, to be weighed and measured against professional wisdom and research evidence, but shapes the way in which other types of knowledge are applied to a particular situation.

Figure 1.

Service-user expertise as knowledge frame.

What is less clear, however, is what counts as evidence and the relationship between service-user expertise and evidence. Is the service-user's role limited to the broad domain of individual expertise shaping the process of evidence-based practice within individual interactions, or do service users have a legitimate and valuable role in contributing to research evidence (and also potentially to practitioner expertise given that, in the mental health sector in particular, many service users are employed professionals, although it is beyond the scope of this article to go into this aspect in depth)?

While not all versions of the hierarchy of evidence include service-user opinion on the lowest rung, as part of expert opinion, some do (Fraser et al., 2009; Glasby & Beresford, 2006). It is a somewhat incongruous inclusion on the hierarchy that a tool designed specifically to reduce bias and introduce rigour and accuracy to practice and policy decision making would include the highly subjective category of expert opinion. Rather, proponents of evidence-based practice seem to suggest that the value of expert opinion is in critiquing, analysing and reviewing the evidence as derived from, rather than a contribution to, the hierarchy. There are a number of problems in positioning expert opinion on the lowest rung. One is that, as a hierarchy, this implies that the opinion of experts, including service users, is less reliable and less useful in formulating social service programs and policy, an implication which feeds into criticism of evidence-based practice as overly authoritarian, simplistic and lacking in understanding of the importance of professional judgement (Denzin, 2009; Hammersley, 2005). Second, it fails to capture the way in which service-user perspectives (and the perspectives of other experts) might contribute to the formulation of different types of evidence and that service users could have a role in leading, participating in, and informing methodologically rigorous research, a role which many of the respondents in this study considered to be important to their functions as service-user representatives.

In light of Plath's (2008) analysis of the theoretical influences on evidence-based practice within the field of social work, it can be seen that much of the literature on evidence-based practice as a model, derived from evidence-based medicine where the hierarchy of evidence was central, tended towards positivism. The positivistic model of evidence-based practice presents a dilemma for participatory practice viewed from a service-user perspective. Service users in this study clearly indicated that they responded to, and respected, information which came from, fellow service users, which within a positivistic discourse was unlikely to meet criteria of rigour and objectivity for inclusion as evidence. Those service users with the interest and capacity to participate in representative activities also clearly indicated that they considered contributing to and, in some cases, leading research as an important and relevant component of their role as service-user representatives. However, their interest in research was subjective. For example, Greta (mental health service user) was participating in a participatory action, user-led study on peer support for the explicit purpose of demonstrating that this type of intervention was effective within a recovery framework, to advocate for greater funding for this type of activity. The outcome sought from the study was predetermined and the bias was significant. The evidence was politicised in this instance, to be ‘used strategically to obtain resources, further causes’ (Gray et al., 2009, p. 53). Similarly, most service users in the study indicated that their interest in acting as representatives and advocates was premised on a desire for change and improvement and many had formulated specific ideas about what this would look like. Far from objective approaches to evidence generation, they saw that their subjective knowledge derived from personal experience was equally valuable. As such, this study indicated that, while academic debate on evidence-based practice has centred on questions of rigour and relevance, service users perceive themselves to have a role in evidence-based practice that fits within a political framework, indicating again the tension between a scientific and social justice approach to practice and policymaking.

Within the discourse of pragmatism, authors such as Glasby and Beresford (2006) have attempted to redefine evidence-based practice in such a way that it accounts for diverse modes of knowledge drawn from qualitative and quantitative research, as well as professional and service-user perspectives. This pragmatic approach marks a middle ground between the politicised notion of evidence from a service-user perspective and empirical notions of evidence according to researchers and academics.

Rigid conceptualisations of evidence-based practice do not recognise service-user expertise as a type of evidence because of the subjectivity and bias implicit in, and important to, this type of knowledge. They are also at odds with the idea of service users as researchers, because service-users' subjective experience is not seen as a valid form of knowledge despite the fact that service-user involvement might make research more relevant, applicable and meaningful. The inclusion of service users in systematic reviewing processes might bias outcomes and, indeed, as indicated in this study, that would be service-users' intention to promote social justice and service improvement as a goal. Nevertheless, as shown in Figure 1, at an individual treatment level, the service-users' interests are central to the critical appraisal of research evidence.

Service users could have a role in contributing to the evidence base where evidence-based practice was conceptualised as pragmatic, acknowledging the challenges to objectivity, while still using systematic, rigorous methods and a wider range of research approaches and contributions. Glasby and Beresford's (2006) proposition of knowledge-based practice and Pawson's (2006) realist synthesis are similarly representative models, which acknowledge rigorous and reliable research to inform decision making while not ignoring complexities and context. While the hierarchy of evidence may in fact devalue subjective forms of knowledge and expertise, the entire notion of evidence-based practice should not be disregarded and, as argued by Mullen et al. (2005), an inclusive, dynamic approach to evidence is required, in which professionals are able to critically assess the evidence.

Study limitations

This exploratory study has limitations that are important when considering its generalisability. It is intended to give an insight into a particular group of people's experiences and perspectives, but does not reflect the full diversity and heterogeneity of the many people who experience homelessness and/or mental health issues. Because the service users who self-nominated to take part in the study were recruited through service-user advocacy groups, most of the participants were active in representative activities, such as consumer advisory groups. As an in-depth qualitative study, the sample size is quite small and is not necessarily representative. It should also be noted that this study was conducted in New South Wales, Australia and that the experiences of service users and service providers reflect the particular mix of government, non-government, state and national policies and services in that area. However, the complexity of navigating this service system and the challenges experienced are likely to have relevance to other areas across Australia, and potentially internationally.

Conclusion: An inclusive approach to evidence

A model of evidence-based practice relevant and meaningful to service users requires an integrated approach, which emphasises evidence-based practice as a process, whereby the service-user's insight, knowledge, values and expertise determine judgements about relevant evidence. Such a model should not require service users to behave like consumers shopping around for services or advocates championing their own interests, but should place the onus on service providers to understand the service user and mould services to fit the particular circumstances of a particular client. Service users should be supported in seeking information independently (such as through the internet), but this ought not be a demand of service users. Within an integrated model of evidence-based practice, the skill required of practitioners and professional service providers is to engage with, and understand the needs of, service users, critically assess what is relevant and meaningful evidence to a particular circumstance, and then apply this with a level of collaboration appropriate to the capacity of the client at the time.

The challenge for ongoing research is to devise tools to support the critical appraisal of evidence, while acknowledging the complex realities of human services practice, bearing in mind that rigour and reliability need not necessarily exclude service-user contributions. In the absence of evidence on the most effective, fair and inclusive means of engaging service users in research, service users in this study valued the knowledge and wisdom gained from their peers. Notions of service-user engagement are complex and require a dynamic and flexible approach. Service users are mindful of the way in which they have been offered tokenistic opportunities to have their say that have been about placation more than real engagement. Engaging in research might offer a means for redressing imbalances in power between service users, policy makers and service providers, because it is a means by which expertise might be explicitly acknowledged and by which knowledge production might be considered collaborative.

Footnotes

Ethics

Ethical approval for this project was given by the University of Newcastle Human Research Ethics Committee, Reference No. H-2009-0233.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Acknowledgements

The authors would like to thank those service users and service providers who so generously contributed their time and stories to this project. We are enormously grateful to those people who shared their personal experiences of navigating the mental health and homelessness service sectors. This manuscript has not been published elsewhere and has not been submitted simultaneously for publication elsewhere.

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