Partnering with public and patients: the vital role of panels in research and governance

Foote, Georgia Elizabeth and Uhm, Seilin (2023) Partnering with public and patients: the vital role of panels in research and governance. 27th Cochrane Colloquium London 2023, , London, United Kingdom. 04 - 06 Sep 2023.

Abstract

Background: coproduction and collaboration are crucial for building trust in research evidence. In this study, we discuss the important role of public and patient panels in health research, including their construction and use, to ensure that research addresses priority questions important to them. We emphasise the importance of engaging patients and experts in research projects, programmes and governance systems to promote patient-centred research.

Methods and results: we conducted a comprehensive search of multiple databases and identified seven guidelines on public involvement in research published between 2010 and 2022, including the World Health Organization and the James Lind Alliance. From these guidelines, we identified the different types of knowledge, skills and expertise that can be mobilized for panels. We also explored the role of expert panels in health research and how they influence research questions, methods and findings. Discussion: Engaging patients and other experts in research projects ensures that research is conducted from a broader perspective. Although evidence-informed health services seek findings from research that minimises bias and error, this is of limited benefit if the research questions are biased or misunderstood. Panels collect and analyse data from panel participants, and their purpose is to make decisions about research with or by patients and the public. Embedding someone with lived experience as a PPI coordinator/coapplicant within the team has a significant impact on the research’s effectiveness. This approach ensures that patients’ and the public’s perspectives are effectively captured and integrated into the decision-making process.

Conclusion: involving the public in research decision-making processes leads to better and more relevant decisions, garnering support for change and facilitating the uptake of services. Partnering with a broad range of people to make judgements about doing and using research is crucial to ensure that research is conducted with a broader perspective, promoting patient-centred research. We emphasise the need for partnership working and coproduction in research to ensure that research addresses priority questions important to the public.

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Contributors

Author: Seilin Uhm

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