Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK‐based qualitative interview study

Abstract

BackgroundThere are mounting calls for robust, critical evaluation of the impact of patient and public involvement (PPI) in health research. However, questions remain about how to assess its impact, and whether it should be assessed at all. The debate has thus far been dominated by professionals.ObjectiveTo explore the views of PPI contributors involved in health research regarding the impact of PPI on research, whether and how it should be assessed.DesignQualitative interview study.Setting and participantsThirty‐eight PPI contributors involved in health research across the UK.ResultsParticipants felt that PPI has a beneficial impact on health research. They described various impactful roles, which we conceptualize as the ‘expert in lived experience’, the ‘creative outsider’, the ‘free challenger’, the ‘bridger’, the ‘motivator’ and the ‘passive presence’. Participants generally supported assessing the impact of PPI, while acknowledging the challenges and concerns about the appropriateness and feasibility of measurement. They expressed a range of views about what impacts should be assessed, by whom and how. Individual feedback on impact was seen as an important driver of improved impact and motivation to stay involved.ConclusionsWhile there appears to be widespread support for PPI impact assessment among PPI contributors, their views on what to assess and how are diverse. PPI contributors should be involved as equal partners in debates and decisions about these issues. Individual feedback on impact may increase PPI contributors’ potential impact and their motivation to stay involved.

Public involvement in the dissemination of the North West Coast Household Health Survey: Experiences and lessons of co‐producing research together

“…In line with these recommendations, we will be investigating new topics such as self‐harm and will be implementing findings in practice to help reduce health inequalities. These changes to our dissemination and overall translation of evidence clearly showcase the positive impact that public involvement has had and is still having in the dissemination of the HHS, supporting previous evidence by public advisers on the impact and value of their public involvement in health research . Moreover, this highlights the value of involving the public in order to reduce inequalities in health and also their value in the implementation of the findings due to their knowledge of the local communities, which is corroborated by previous evidence .…”

“…These changes to our dissemination and overall translation of evidence clearly showcase the positive impact that public involvement has had and is still having in the dissemination of the HHS, supporting previous evidence by public advisers on the impact and value of their public involvement in health research. 6 Moreover, this highlights the value of involving the public in order to reduce inequalities in health 14 and also their value in the implementation of the findings due to their knowledge of the local communities, which is corroborated by previous evidence. 20,21 As a result, one priority will be to accumulate all findings from a mental health perspective and draft a policy paper with guidelines for policy and potential pathways for implementation.…”

“…4,5 Past research suggests that members of the public have reported to feel that their contributions have had a positive impact on shaping health research. 6 The benefits of engaging the public are not restricted to the actual research project, however; as being involved as a member of the public can also increase self-confidence and allow people to improve their personal skill sets. 7 The North West Coast region contains some of the most disadvantaged neighbourhoods in England.…”

Subtle voices, distant futures: a critical look at conditions for patient involvement in Alzheimer’s biomarker research and beyond

“…The latter is outside the scope of this paper, meaning that we leave open the question if our strategies will indeed result in effective participationthat is, if participation indeed will influence the decision making in the specific project. This would lead us into a complex discussion of how to define 'successful participation', including if effectiveness should be the main criterion, or if other outcomes may legitimize and make participation efforts meaningful for patients, researchers, and/or society (Crocker et al 2017).…”

Person-Centered Healthcare and Integrated Public Health

“…Patients as research partners in the clinic, at home, and in the lab can provide the fine details for a successful implementation that differentiate a research finding that sits expensive and unused from primary care that improves quality of life [2,3]. Life experiences can reveal practical wisdom for prioritizing the health questions that matter to patients [4]. It is possible that contributions by patient research partners may go unreported, and this can be compounded by role confusion where the terms “public involvement”, “community engagement”, “citizen support”, and “quantified self-groups” are used interchangeably [5].…”