PPIE New study highlights why meaningful public involvement is essential to better health research
A new study published in Research Involvement and Engagement highlights the vital role that Patient and Public Involvement and Engagement (PPIE) plays in making health research more relevant, inclusive and grounded in what matters most to patients and communities.
This project began as student research project but shortly developed into a full size study exploring the aspirations and realities of PPIE. The study was led by undergraduate medical students Lili Gyopár, Anna Rida, Paapa Baffoe and Dave Varughese, working with researchers Kirsten Bell, Viveka Guzman and Helen Ward at Imperial College London, and supported by community partner Habiba Haque.
The team interviewed 15 biomedical researchers at Imperial College London about their experiences of PPIE. Their findings show that when public involvement is done meaningfully, it can shape research in important ways — helping researchers think differently, ask better questions, and stay connected to the real lives behind the science.
Habiba Haque, community partner involved in the study says:
“I was delighted to contribute as a community partner to the published study, “If the funders said to me that I have to dress in orange, I would dress in orange”, findings from qualitative interviews on researchers’ experiences of public involvement. By supporting the development of the interview guide and contributing to the data analysis, I helped bring a community perspective to the research process, an experience that strengthened my commitment to ensuring that lived experience and community voices are at the heart of more inclusive, equitable, and impactful health research”.
The paper highlights the importance of being clear about what is meant by public involvement and engagement. It shows that these terms are often used broadly or interchangeably, even though they can refer to different kinds of relationships between researchers and the public, and that greater clarity can help support more meaningful practice.
The study adds to growing evidence that PPIE should not be seen as an optional extra, but as an essential part of high-quality health and biomedical research. Researchers interviewed for the study described how public involvement made their work more human, more accessible and more responsive to patient needs. In some cases, it influenced study design, recruitment approaches and how findings were shared. In others, its value lay in helping researchers reflect more deeply on their work and its real-world purpose.
The findings also point to the need for structural change from funders and institutions if meaningful PPIE is to become a fully supported and valued part of research. The study argues that researchers need the time, resources and recognition to do this work well, and that PPIE should be considered, where appropriate, when researchers are evaluated for promotion and funding.
The authors also call for a shift in how PPIE is assessed. Rather than focusing mainly on whether activities and deliverables have been completed, they argue that greater attention should be paid to impact it generates. Public involvement influences researchers’ thinking, improves the relevance of research, strengthens dialogue with communities and helps shape better research questions and practices.
The study suggests that a more flexible approach is needed – the one that reflects the realities of different research fields and recognises where public contributions can be most meaningful. For researchers who had experienced meaningful PPIE, it was often described as one of the most rewarding parts of their work. Listening directly to patients and public contributors helped reinforce the purpose of their research, feel appreciated and supported by the community in their research, and create lasting professional relationships and skills.
The study’s conclusion is clear: PPIE matters not only because it strengthens research, but because it helps ensure that health research remains connected to the people it is intended to serve. Researchers should be engaging in PPIE in the way most meaningful for them, their research and the community. And to realise its full value, public involvement must be properly supported, meaningfully recognised, and assessed by the difference it makes rather than by outputs it delivers.
This study was conducted at the NIHR Imperial Biomedical Research Centre and supported by the Patient Experience Research Centre (PERC) at Imperial College London.
Gyopár, L., Bell, K., Guzman, V., Haque, H., Rida, A., Baffoe, P., Varughese, D. and Ward, H., 2026. “If the funders said to me that I have to dress in orange, I would dress in orange”: findings from qualitative interviews on researchers’ experiences of public involvement. Research Involvement and Engagement, 12(1), p.106.
