Public involvement in health research: a case study of one NHS project over 5 years

Abstract

Background: Public involvement, both in the National Health Service (NHS) and in clinical research, is promoted as an important democratic principle. The declared aims are to reduce professional autocracy and allow a broader ownership of the research agenda; also to improve the design of, and recruitment and retention of patients to, clinical studies. There have been a number of national initiatives in the UK to improve public input to clinical research activities, but very few reports of effective and sustainable partnerships over time. This study reports the evaluation of one example, which is embedded in the NHS and university partnerships in the Norfolk area of England. Objectives: Evaluate:> Putting principles into practice of public involvement in research over a 5 year period for one specific project (Patient and Public Involvement in Research).> How the model contributes to, and impacts upon, all stages of the research process. > Attitudes of the research community and lay volunteers to their mutual experiences of public involvement.> Key factors and strengths of this project, and areas for improvement. Methods: A mixed methods approach related to the 5 years from start of 2003 to end of 2007. This used descriptive statistics of volunteer activity, interviews with key stakeholders (13), questionnaires (53% response rate), and focus group with 10 volunteers to explore emergent themes. We analysed findings using a policy framework approach.Results: About 47 of the original 55 volunteers remained on the panel after 5 years. All have undertaken training, 38% have been involved in the full range of research activities offered, and 75% have attended at least one research project meeting. Some are active in governance, ethics, and advisory committees. Both the research community and the volunteers are very positive about the project. The researchers find it provides well prepared personnel, and gives a speedy and efficient way of fulfilling the expectations of funders for lay input. The volunteers find it gives them important opportunities to influence the quality of research and thus support improvements in patient care. Areas for improvement include increasing social diversity among the volunteers, and improving feedback on input from volunteers, without which volunteers tend to lose confidence and motivation. Conclusion: Longterm sustainable and valuable public input to research is possible. Key factors are committing resources, embedding the service in the infrastructure of a research consortium, and ongoing responsiveness by NHS staff and researchers. Additional activity to recruit and support access may be needed to attract people from a broad range of

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“…147,159 Commitment to the principles of user involvement All interviewees expressed strong support for the principles of user involvement. Researchers interviewed early on in the evaluation discussed the positive, practical impacts that they expected DUAG members could have on the research, such as ensuring that research participants are not overburdened and improving the wording of participant information material.…”

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

“…79,[85][86][87] Moreover, qualitative data collection by service users as co-researchers has been claimed to improve validity and provide better-quality data. [88][89][90] Dissemination of research findings is also reported as gaining from PPI networks to increase access to peers 81 and relevant sections of the community, 15 and making information more broadly readable. 31,72 There are fewer published claims for PPI as playing a significant role in implementing findings, but, in a US public health research programme, Krieger et al 86 report PPI-related implementation of changes by increasing their cultural relevance.…”

“…These include increased relevance of the research through identifying research questions and prioritising research agendas, appropriate research conduct, addressing ethical tensions and matching research with policy objectives. 12,[15][16][17][18][19] These three drivers have resulted in PPI being imperative for health research in the UK. However, despite this, PPI is poorly defined and conceptualised, 20,21 with varied definitions and terms used to describe it.…”

“…However, there can also be unintended consequences of this role in that acting as a bridge 188 between the research team and lay representatives could result in research teams abdicating any responsibilities for PPI engagement. Equally, PPI panels such as those established in the NIHR 78 or regional 15,144 research infrastructure could also have the unintended consequence of PPI becoming a commodity and, in a few examples, reinforce the separation between lay and research worlds.…”

‘The missing links’: understanding how context and mechanism influence the impact of public involvement in research

“…17 This is in contrast to the findings from a large number of observational evaluations where involvement has been reported to have a major impact at this stage of the research. 4,[30][31][32][33][34][35] Patient-generated information has been reported to be more accessible and acceptable to other patients, which is then understood to lead to better recruitment and retention. The discrepancy between the findings from the observational evaluations and those from this experimental evaluation can be explained by considering the contextual factors that appear to influence whether this type of involvement is likely to make a difference (Box 4).…”