Background/Purpose: Non-white racial/ethnic groups remain underrepresented in rheumatic disease-related research despite being disproportionately affected by these disorders. We aimed 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 November 2018. We identified 642 unique studies; seven met inclusion criteria (peer-reviewed articles, published in English in last 20 years, adult population, focus on underrepresented patients’ participation in rheumatic research) by two independent reviewers. Data abstraction was performed and common themes and key differences were determined and adjudicated.

Results: The seven articles included (n=1,892 patients, range n=20 to n=961) evaluated factors associated with research participation of underrepresented populations. Five related to lupus, two to rheumatoid arthritis and five focused on African American patients, one on Hispanic. Five of the studies provided quantitative data through surveys (n=3) and chart review (n=2), while two utilized qualitative analyses. The key themes regarding underrepresented patients’ perceptions of participating in research included: 1) importance of trust in the patient-physician relationship, 2) key motivators and barriers affecting willingness to participate, 3) the implications of strict inclusion criteria on study participant diversity and 4) the need for authentic academic-community partnerships with an understanding of heterogeneity within ethnic groups.

Conclusion: Overall, limited evidence exists regarding underrepresented patients’ attitudes towards 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.

Table 1

Figure 1

« Back to 2019 ACR/ARP Annual Meeting

ACR Meeting Abstracts - https://acrabstracts.org/abstract/factors-associated-with-participation-in-rheumatic-disease-related-research-among-underrepresented-populations-a-systematic-review/