Kaitlin Lima1, Courtnie R Phillip2, Jessica Williams2, Jonna Peterson3, Candace H Feldman2, Rosalind Ramsey-Goldman4. 1. Department of Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL. 2. Division of Rheumatology, Immunology and Allergy, Department of Medicine, Brigham and Women's Hospital, Boston, MA. 3. Galter Health Sciences Library and Learning Center, Northwestern University Feinberg School of Medicine, Chicago, IL. 4. Department of Medicine/Division of Rheumatology, Northwestern University Feinberg School of Medicine, Chicago, IL.
Abstract
OBJECTIVE: 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 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; seven met inclusion criteria (peer-reviewed articles, published in English in last 20 years, adult population, 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 seven articles included (n=1,892 patients, range n=20-961) 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. Key themes regarding underrepresented patients' perceptions of participating in research included: 1) importance of trust in the patient-physician relationship, 2) understanding of heterogeneity within and between ethnic groups, 3) 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 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. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.
OBJECTIVE: 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 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; seven met inclusion criteria (peer-reviewed articles, published in English in last 20 years, adult population, 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 seven articles included (n=1,892 patients, range n=20-961) 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. Key themes regarding underrepresented patients' perceptions of participating in research included: 1) importance of trust in the patient-physician relationship, 2) understanding of heterogeneity within and between ethnic groups, 3) 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 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. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.
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