From patients to policymakers: widening stakeholder participation in research
Anne-Marie Boylan, Stephanie Tierney, Kamal Mahtani
28 November 2019
ESWG 4 PPI
Evidence Synthesis Working Group and Centre for Evidence Based Medicine, Nuffield Department of Primary Care Health Sciences, University of Oxford
Stakeholder involvement has become increasingly important in health services research. In this blog, we present the discussions we had with a range of stakeholders, including patients, clinicians, policymakers, researchers and academics, to learn more about their views and perceptions on this phenomenon.
Recent years have seen a drive to involve patients and members of the public in health research. Some funders insist on it. For example, it is now a requirement of all NIHR funding applications to have Patient and Public Involvement (PPI) embedded in the proposed work.
PPI aims to ensure that the needs and priorities of the end users of research are considered throughout the project from design to dissemination. This has led to research about the impact of involvement on PPI contributors, researchers and the research.
But what if the end users of research are other types of stakeholders, such as policymakers, clinicians or third sector workers? This was a question we explored in an interactive, discussion-based workshop at EBMLive in July 2019. It was attended by 45 patients, clinicians, policymakers, researchers and academics.
We started by exploring a broad definition of what constituted a stakeholder. One starting point for this was - those most likely to use the research outputs. Taking this perspective, stakeholders could, therefore, comprise patients, members of the public, carers, policymakers, health and social care professionals, charities, funders, industry, regulators, researchers and politicians. Given this broad range of people, how would a research team know who to involve? Through the discussion, one suggestion put forward was that choice of which stakeholders to involve could be shaped by the research question. The process of prioritising stakeholders, based on the research question, could be facilitated by existing tools to help do this.
Like many other aspects of research, involving a wide group of stakeholders was thought to bring potential benefits. Participants thought that stakeholder involvement could bring important context to research projects, making them more relevant and useful. Involving stakeholders could improve the championing and implementation of a study. It was noted that involving a wide range of stakeholders could result in the pluralisation of perspectives offered to research based on ‘real life’ experience.
Involving stakeholders in research was not thought to be without its challenges. This included the time, effort and resources required to bring together diverse interest groups, as well as how to incentivise involvement in research. There was some concern over how to prioritise the views of such a diverse group. For example, what if policymakers and health professionals’ views differed? How would the research team resolve that? There were some views that certain stakeholders may bring their own conflicts to the research project (e.g. in the case of industry collaborators), which will need to be considered for their potential impact. Other questions raised on stakeholder involvement included how best to implement this sort of involvement? How one would access professional people to involve? Sure, this work could generate a great deal of additional information – but what would be done with that? How would it be reported or included in the progress of the project?
This type of approach is already taken in Canada as part of the Knowledge Translation program, led by Andrea Tricco. Stakeholders, including clinicians, policymakers and patients, are brought together in research projects based on clinical questions. Closer to home in the UK, healthtalk.org is a rigorous database of qualitative patient experience research conducted by, or in collaboration with, the Health Experiences Research Group and hosted by the DIPEx Charity. Each of the over 100 research projects available on the site has included a range of stakeholders on project advisory panels. They take a transparent approach and display a list of panel members involved in each project alongside the findings of the research. There is no direct evidence of the benefit of this approach, but the experiences of the researchers’ who conducted the work points to this being a worthwhile and positive endeavour. So this type of involvement is already happening, but why then is it not more common? We suspect that it is in many places, but has not been formally written about in the literature.
From the workshop, there was a clear consensus that stakeholder involvement in research could bring significant benefits, but needed careful thought, planning and intention. We call for more open discussion in the literature of how people currently implement this type of involvement so that the research community in general can benefit from this shared knowledge. This may ultimately lead to a requirement that all research proposals and completed protocols include a statement about how stakeholders were involved. Of course, we do not believe this should diminish or deflect from existing patient and public involvement practices or support. Instead, it should be seen as a way to supplement the views of all potential end users of research and the added value that this could bring.
Acknowledgements: AMB, ST and KM are members of the NIHR SPCR Evidence Synthesis Working Group [project number 390]. We are grateful to the following people for their help in designing and conducting the workshop: Bernard Gudgin and Julia Hamer-Hunt (ESWG PPI contributors), Amadea Turk (Researcher in Evidence Synthesis), and Andrea Tricco (Director of the Knowledge Synthesis Team, Knowledge Translation Program, St Michael’s hospital and University of Toronto).
Disclaimer: The views expressed in this commentary represent the views of the authors and not necessarily those of the host institutions, the NHS, the NIHR, or the Department of Health.
 Crocker JC, Ricci-Cabello I, Parker A, et al. Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis. BMJ 2018;363:k4738 http://dx.doi.org/10.1136/bmj.k4738
 Boylan A-M, Locock L, Thomson R, Staniszewska S. ‘About sixty percent I want to do it’: health researchers’ attitudes to, and experiences of, patient and public involvement (PPI) – a qualitative interview study. Health Expectations 2019; 22(4) https://doi.org/10.1111/hex.12883
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