Priorities and expectations of researchers, funders, patients and the public regarding equity in medical research and funding: results from the PERSPECT qualitative study.

Abstract

Background: Considerations of equity in funding and conduct of medical research are receiving greater attention. However, perspectives of diverse stakeholder groups on this topic are poorly characterized. Our study aimed to further understand broad stakeholder perspectives and priorities regarding inequities in medical research and funding, including implications for international collaborations with low-and middle-income countries (LMICs).

Methods: Participants were recruited through purposive and snowball sampling. We employed a qualitative descriptive methodology embedded in an interpretive grounded theory framework. This approach involved in-depth, semi-structured interviews with researchers, funders, patients, and members of the public. Participants were asked to discuss their perspectives on the current state of equity in medical research and funding. Collected data were analyzed using constant comparison, open-coding, and theme identification to generate a substantive theory.

Results: We conducted 41 interviews involving 11 researchers, 10 funders, 10 patients, and 10 members of the public. Participants perceived several inequities within research participation, funding opportunities, topic prioritization, and lack of international collaborations inclusive of LMICs. Potential strategies to address these inequities were also identified. Through participants' perspectives, we developed a central theory that addressing inequities in medical research and funding can promote collaborative spaces and produce greater research impact for society, regardless of demographics, socioeconomic status, and geographical residence. While we gained diverse perspectives from four distinct stakeholder groups, our primary limitation was that participants in our study were predominantly from Canada and the United States.

Conclusions: Participants perceived various inequities in the funding and conduct of medical research. Our findings were primarily captured from participants living in Canada and the United States. However, we were able to gain insights of challenges and potential solutions through their diverse perspectives, and we are optimistic that sustaining efforts to mitigate medical research and funding inequities will help accelerate and broaden the societal impact of medical research within and across countries, including in LMICs.