Factors Associated With Participation in Rheumatic Disease–Related Research Among Underrepresented Populations: A Qualitative Systematic Review

Objective: Nonwhite racial/ethnic groups remain underrepresented in rheumatic disease–related research, despite being disproportionately affected by these disorders. Our objective was to systematically review the literature regarding underrepresented patients’ perceptions of participation in rheumatic disease research and to develop strategies to improve diversity. Methods: A systematic search of Embase, PubMed/Medline, PsycINFO, and Cochrane was performed through October 2018. Two independent reviewers identified 642 unique studies; 7 met inclusion criteria (peer-reviewed articles, published in English in the last 20 years, adult population, and with a focus on underrepresented patients’ participation in rheumatic research). Five coauthors provided final approval of included articles. Data abstraction was performed, and common themes and key differences were determined and adjudicated. Results: The 7 articles included (n = 1,892 patients, range per article 20–961) evaluated factors associated with research participation of underrepresented populations. Five articles were related to lupus and 2 to rheumatoid arthritis, and 5 focused on African American patients and 1 on Hispanic patients. Five of the studies provided quantitative data through surveys (n = 3) and chart review (n = 2), while 2 used qualitative analyses. Key themes regarding underrepresented patients’ perceptions of participating in research included: 1) the importance of trust in the patient– physician relationship, 2) the understanding of heterogeneity within and between ethnic groups, 3) the need for authentic academic-community partnerships, and 4) the implications of strict inclusion criteria on study participant diversity. Conclusion: Limited evidence exists regarding underrepresented patients’ attitudes toward research participation in rheumatology, and further investigation is warranted. The themes identified provide a starting point for future interventions that promote increased diversity in rheumatic disease–related research studies.