Objective: Despite knowledge that health outcomes vary according to patient characteristics, identity, and geography, including underrepresented populations in arthritis research remains a challenge. We conducted interviews to explore how researchers in arthritis have used equity, diversity, and inclusion (EDI) principles to inform their research.
Methods: Semi-structured interviews were conducted with individuals who 1) have experience conducting arthritis research studies; 2) reside in and/or conduct their research in Canada; and 3) speak English or French. Participants were recruited using purposive and respondent-driven sampling. Interviews were conducted over video-call and audio-recordings were transcribed. Template analysis was applied to interview transcripts to explore participant experiences and perceptions of EDI in arthritis research.
Results: Participants (n=22) identified that a lack of representation in arthritis research translates to the inability to provide comprehensive care. Participants emphasized considering EDI early in all arthritis research to effectively impact a study. Themes were categorized as benefits, barriers, and facilitators. The perceived benefits were the ability to generate knowledge and reduce health disparities. Barriers included mistrust from historically exploited populations, unintended consequences, lack of access to research opportunities, and logistical challenges. Facilitators included building community partnerships, curating diverse research teams, incentivizing researchers and funder support, and fostering humility in research environments.
Conclusion: Improving representation in research is needed to improve health outcomes for diverse groups of people living with arthritis. Identified barriers to EDI in research must be addressed, while partnerships and supports must be facilitated to achieve more representation in arthritis research within Canada.
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