Credibility and the ‘professionalized’ lay expert: Reflections on the dilemmas and opportunities of public involvement in health research

Thompson, Jill; Bissell, Paul; Cooper, Cindy; Armitage, Christopher J.; Barber, Rosemary

doi:10.1177/1363459312441008

Cited by 81 publications

(113 citation statements)

References 13 publications

(24 reference statements)

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“…In contrast, experiential expertise was concentrated upon when an informal process led stroke survivors and carers to join a group with a majority of lay members, which operated at a local level and did not provide training or education. The distinction between professional and experiential expertise has been described previously in the context of PPI in cancer research (Thompson, 2012) and lay participation on a research ethics committee (Dyer, 2004). The recruitment of participants from a variety of organisations and PPI groups in this study allowed this to be explored in the context of different group structures.…”

Section: Discussionmentioning

confidence: 96%

Exploring patient and public involvement in stroke research: a qualitative study

Harrison

Palmer

2015

Disability and Rehabilitation

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Purpose: To explore the experiences of patients and carers involved in patient and public involvement (PPI) activities for stroke research.Method: Semi-structured interviews conducted with stroke survivors and carers (n=11) were analysed using thematic analysis.Results: Four key themes emerged: impact of PPI on the individual and the research process, credibility and expertise, level of involvement, and barriers and facilitators to PPI for stroke survivors and carers. The perceived benefits to the research process included: asking questions, keeping researchers grounded and directing the research agenda. All participants drew upon their experiential expertise in their PPI role, but some also drew upon their professional expertise to provide additional credibility. Stroke survivors and carers can be involved in PPI at different levels of involvement simultaneously and the majority of participants wanted to be more involved. Barriers to involvement included: location, transport and stroke survivors capacity to concentrate and comprehend complex information.Facilitators included: reimbursement for travel and time and professionals effort to facilitate involvement.Conclusions: PPI in stroke research benefits stroke survivors and carers and is perceived to benefit the research process. The barriers and facilitators should be considered by professionals intending to engage stroke survivors and carers collaboratively in research. Implications for rehabilitation This study has implications for PPI in stroke rehabilitation research, which could also be extrapolated to stroke rehabilitation service development and evaluation. Professionals facilitating PPI need to invest in developing supportive relationships in order to maintain ongoing involvement. Professionals need to be aware of how the varied consequences of stroke might impede participation and strategies to facilitate involvement for all who wish to be involved. For each rehabilitation issue being considered professionals need to decide: (1) how representative of the specific rehabilitation population the PPI members need to be, (2) whether experience alone is sufficient or whether additional professional skills are required and (3) whether training is likely to assist involvement or potentially reduce the lay representation.3

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Section: Discussionmentioning

confidence: 96%

Exploring patient and public involvement in stroke research: a qualitative study

Harrison

Palmer

2015

Disability and Rehabilitation

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“…So the argument ricochets between training and 'professionalisation' of PPI resulting in the loss of the lay perspective 22,208 and also to counter the moral argument for PPI, 208 and the need for some training 209,210 to carry out certain tasks required in the PPI role. Although this was not articulated by any of our PPI respondents, in the ethnographic study conducted by Thompson et al 46 they describe the balancing act carried out by the PPI respondents to have enough knowledge to be able to contribute within a trial steering committee, but also to remain credible.…”

Section: Impact Of Involvement On Patient and Public Representativesmentioning

confidence: 92%

“…43 However, while there is growing recognition of the importance of experiential knowledge being addressed alongside scientific understanding, 44 there is also clearly often an intrinsic resistance to acknowledging lay knowledge, particularly in the sphere of biomedical research. 44,45 Patient and public involvement: the policy argument Although some parts of the scientific community have contested what knowledge is credible, 46 the public crisis in confidence in the way health and care services were being run contributed towards a policy shift through the 1990s whereby governance moved towards partnership and community involvement. 37 The consumerist movement in the 1980s provided a focus on customer satisfaction, and the involvement of patients and the public was perceived as a feedback system to ensure that the NHS was meeting the needs of service users.…”

Section: Patient and Public Involvement: The Moral Argumentmentioning

confidence: 99%

“…This frequent restructuring of mechanisms designed to enable the patient and public voice suggests that policy-makers are still seeking more effective ways of operationalising PPI. 47 While the policy argument has been presented in terms of PPI within the NHS as a whole, PPI within health research, although more recently established, 46 has equally been shaped by policy-makers.…”

Section: Patient and Public Involvement: The Moral Argumentmentioning

confidence: 99%

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ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Wilson

Mathie

Keenan

et al. 2015

Health Serv Deliv Res

214

281

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BackgroundPatient and public involvement (PPI) is a prerequisite for many funding bodies and NHS research ethics approval. PPI in research is defined as research carried out with or by the public rather than to, about or for them. While the benefits of PPI have been widely discussed, there is a lack of evidence on the impact and outcomes of PPI in research.ObjectivesTo determine the types of PPI in funded research, describe key processes, analyse the contextual and temporal dynamics of PPI and explore the experience of PPI in research for all those involved. Mechanisms contributing to the routine incorporation of PPI in the research process were assessed, the impact of PPI on research processes and outcomes evaluated, and barriers and enablers to effective PPI identified.DesignA three-staged realist evaluation drawing on Normalisation Process Theory to understand how far PPI was embedded within health-care research in six areas: diabetes mellitus, arthritis, cystic fibrosis, dementia, public health and learning disabilities. The first two stages comprised a scoping exercise and online survey to chief investigators to assess current PPI activity. The third stage consisted of case studies tracked over 18 months through interviews and document analysis. The research was conducted in four regions of England.ParticipantsNon-commercial studies currently running or completed within the previous 2 years eligible for adoption on the UK Clinical Research Network portfolio. A total of 129 case study participants included researchers and PPI representatives from 22 research studies, and representatives from funding bodies and PPI networks.ResultsIn the scoping 51% (n = 92) of studies had evidence of PPI and in the survey 79% (n = 80), with funder requirements and study design the strongest influence on the extent of PPI. There was little transparency about PPI in publicly accessible information. In case studies, context–mechanism–outcome configurations suggested that six salient actions were required for effective PPI. These were a clear purpose, role and structure for PPI; ensuring diversity; whole research team engagement with PPI; mutual understanding and trust between the researchers and lay representatives; ensuring opportunities for PPI throughout the research process; and reflecting on, appraising and evaluating PPI within a research study. PPI models included a ‘one-off’ model with limited PPI, a fully intertwined model in which PPI was fully embedded and an outreach model with lay representatives linking to broader communities. Enabling contexts included funder, topic/design, resources, research host, organisation of PPI and, most importantly, relationships. In some case studies, lack of coherence in defining PPI persisted, with evidence of a dual role of PPI representative/study participant. Evidence of PPI outcomes included changes to study design, improvements to recruitment materials and rates, and dissemination.ConclusionsSix salient actions were required for effective PPI and were characterised by a shared understanding of moral and methodological purposes of PPI, a key individual co-ordinating PPI, ensuring diversity, a research team positive about PPI input and fully engaged with it, based on relationships that were established and maintained over time, and PPI being evaluated in a proactive and systematic approach. Future work recommendations include exploring the impact of virtual PPI, cost analysis and economic evaluation of the different models of PPI, and a longer-term follow-up study of the outcomes of PPI on research findings and impact on services and clinical practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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“…Narratives of experience are structured, performative, means of understanding, and persuasion, not an unproblematic means of transparent access to truth. Those asked to narrate their experience are subject to the quest for particular forms of expert, but not too expert, experience (Martin, 2008;Thompson et al, 2012;Snow, 2016).…”

Section: Applying Types Of Ppimentioning

confidence: 99%

Beware Zombies and Unicorns: Toward Critical Patient and Public Involvement in Health Research in a Neoliberal Context

2017

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Patient and public involvement (PPI) in UK National Health Service (NHS) research has become an imperative in policy and practice. However, lack of clarity on what PPI is (or might be) has given rise to a poorly monitored, complex field of activity, variously framed by the expectations of policy makers, funders, host organizations, researchers, health professionals, individual recruits, volunteers, activists, and third sector organizations. The normative shift toward PPI has taken place within a neoliberal policy context, the implications of which needs to be explicitly considered, particularly after the Brexit referendum which has left policy makers and researchers wondering how to better appeal to a distrustful public subjected to "post-truth" and "dog whistle" politics. This commentary examines the prospects for a more critical approach to PPI which addresses context, is evidence-informed and mindful of persistent inequalities in health outcomes, at a time when models of PPI in NHS health research tend to be conceptually vague, derived from limited clinical and managerial settings, and centered on a construction of the abstract, rational, compliant, and self-managing patient or layperson.

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Credibility and the ‘professionalized’ lay expert: Reflections on the dilemmas and opportunities of public involvement in health research

Cited by 81 publications

References 13 publications

Exploring patient and public involvement in stroke research: a qualitative study

Exploring patient and public involvement in stroke research: a qualitative study

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Beware Zombies and Unicorns: Toward Critical Patient and Public Involvement in Health Research in a Neoliberal Context

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