Abstract
This book combines theory and practice, providing a measured assessment of the advantages and disadvantages of involving service users in health and social care research. The author offers a useful counter-balance to some of the less critical, evangelistic proponents of service user participation through an analysis of some risks and downsides. Using examples from his own research practice including research with young people, people from the D/deaf community and people with learning disabilities, he provides insight into the contingent nature of research practice.
Publication is timely, given current UK policy and a recent report by K. Staley in 2009 on the impact of public involvement in NHS, public health and social care research. McLaughlin sets out his own commitment to service user involvement, which, as he describes, can be ‘exciting’ (p. 24).Throughout the book a series of reflexive questions presented in text boxes draw the reader’s attention to issues that require careful consideration when seeking the involvement of service users. McLaughlin avoids the temptation to provide simple solutions, insisting that the reader arrive at their own judgement. He gives due weight and consideration to ethics, including the unethical practice of tokenism or, as he describes it, ‘illusory or non-participative practices’ ‘masquerading as involvement’ (p. 26). Arnstein’s well-known ‘ladder of involvement’ is critiqued with reference to more recent work but also by arguing that ‘Arnstein’s linear model … fails to capture the dynamic nature of user involvement, is only interested in outcomes at the expense of processes and conflates means with ends’ (p. 25). McLaughlin insists on adding tokenism to the three-part model adopted by INVOLVE (an advisory group funded by the National Institute for Health Research) of consultation, collaboration and user controlled research. This presents a challenge to researchers who are now faced with expectations of compliance with NHS research policy but may wish to go beyond mere compliance to address not only Department of Health objectives but the goals of service users or patients, which may not necessarily be the same. With respect to ethics, the author asserts that ‘Compliance is insufficient; compliance leads to routinized practices, technical efficiency and habituated responses at the cost of denying professional responsibility’ (p. 51).
Chapter one sets out the UK policy context and deconstructs the terms service user, client, patient, consumer and ‘expert by experience’ with reference to both ‘democratic’ and ‘managerial’ approaches (p. 20).This is not an original analysis but is a useful summary of policy antecedents and a helpful reminder of the value base of social work, which is the author’s profession. This section could have been expanded with reference to work on citizen-consumers with a discussion of how publics are never found but always constituted.
Ethics are explored throughout Chapter three where the author elucidates the UK Research Governance Framework (RGF). McLaughlin highlights the uncertainty surrounding the implementation of the RGF in children’s services, especially since the introduction in England of Children’s Trusts. Interestingly, he questions whether it may be more ethical to involve service users after funding is obtained and ethical approval secured. This is returned to in Chapter five where it is acknowledged that: ‘The longer service user co-researchers are kept out of the decision-making processes concerning a research project the less collaborative the project is likely to be’ (p. 88). In the section ‘Who decides what research to undertake?’ (p. 46), we read about funders and commissioners but no reference to service users themselves driving this part of the process. This remains an open debate.
Chapter four deals with knowledge claims. The author engages with theoretical and methodological debates and discusses the competing epistemological frameworks of positivism and constructivism. He challenges the view from standpoint theory that experiential knowledge should be privileged above other forms of knowledge, noting that: ‘… what credible and valid are are open to debate and justification’ (p. 84). McLaughlin’s statement that service users can more readily engage in processes of qualitative than quantitative analysis is convincing as he points out that ‘Within more qualitative, social constructionist approaches it is this experiential knowledge that is valued …’ (p. 84), whereas ‘Within a realist quantitative approach the service user contribution is likely to be very limited given its notion about research objectivity, distance and the nature of knowledge generation’ (p. 83).
Chapters five and six cover practical issues including peer review, recruitment of service users as co-researchers, training, literature review, barriers to involvement, establishment of a reference or steering group, development of the research tools, data collection, analysing the data, research report and recommendations. There are helpful examples from the author’s personal research experience. Chapter seven explores involving children and young people in research. Again the policy context is described, including the UK National Service Framework and the UN Convention on the Rights of the Child and again we find practical illustrations. The author generously provides detail on some less than ideal practices as a cautionary tale. For instance, we read about how, on one research project, travel plans were disrupted and he found himself alone with a vulnerable young woman.
Despite the title, the focus of the book is on social care and community-based health care, containing limited discussion and examples of involving service users or ‘patients and the public’ in medical research. The main contribution of the book is that it goes beyond a collection of case studies or a naïve celebration of user involvement in research. Readers are presented not with a simple panacea but with a series of provocative questions that, if carefully considered, ought to enable researchers to work towards meaningful rather than tokenistic involvement.