What motivates public collaborators to become and stay involved in health research?

Abstract

Background

People with lived experience of health and illness are increasingly being involved in research. Knowing what creates interest in becoming involved in health research may help identify appropriate ways of facilitating meaningful involvement. The study aimed to investigate why people became public collaborators in health research and what helped sustain their commitment to staying involved.

Methods

Semistructured individual qualitative interviews were conducted with 11 Norwegian public collaborators recruited from patient organisations. To enhance the quality and relevance of this study, three public collaborators were involved in framing the study and in the data analysis. One of them is a coauthor of this paper. The interviews were analysed through reflexive thematic analysis, and two themes were generated.

Results

The first theme, ‘research as a vehicle to impact’ showed how interest in becoming involved in research was founded on the possibility of impacting healthcare through research. Other inspiring factors were how they appraised the relevance of the research, in addition to the public collaborators’ own sense of moral duty to advocate for research related to their own as well as others, illnesses or diseases. The second theme, ‘‘Acknowledgement and accessibility’, framed how the participants perceived appreciation of experiential knowledge as crucial for maintaining motivation in their role as public collaborators. Other promoters of sustained involvement presented were training for both public collaborators and researchers, adequate allowance as a means for visualising and valuing PPI, and accessible language.

Conclusions

This study contributes to the understanding of how to facilitate meaningful and sustainable PPI, which requires a safe space for collaboration and attention to accessibility. Facilitating meaningful involvement may, in turn, increase the potential impact and sustainability of PPI.

Supplementary Information

The online version contains supplementary material available at 10.1186/s40900-024-00555-5.

Abstract

It has been more common to involve people with lived experiences of health and illness to work with researchers as members of their teams. There is a general assumption that involvement may increase the relevance and impact of research, prompting research funders to require an outline of involvement strategies to obtain research funding. Understanding why people become involved in research may be helpful to improve how researchers and people with lived experience can work together in a good way. In this qualitative study, we interviewed 11 people with experience from involvement, based on their experiential knowledge as patients or next-of-kin, in health research. Three public collaborators were involved in the analysis workshops, and the interviews were analysed using reflexive thematic analysis. Two themes were developed. The first theme, ‘Research as a vehicle to impact’ showed how interest in involvement was triggered by the possibility of impacting health care services through research. The second theme, ‘Acknowledgement and accessibility’, framed the value of appreciation of experiential knowledge, besides the importance of making the research arena accessible for the public in terms of training, payment, and comprehensible language. Meaningful PPI creates a foundation for sustainable recruitment of public collaborators and raises the chances for PPI to have an impact.

Supplementary Information

The online version contains supplementary material available at 10.1186/s40900-024-00555-5.