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Published in: Journal of Community Health 3/2017

Open Access 01-06-2017 | Original Paper

Needs, Priorities, and Recommendations for Engaging Underrepresented Populations in Clinical Research: A Community Perspective

Authors: Jennifer Cunningham Erves, Tilicia L. Mayo-Gamble, Alecia Malin-Fair, Alaina Boyer, Yvonne Joosten, Yolanda C. Vaughn, Lisa Sherden, Patrick Luther, Stephania Miller, Consuelo H. Wilkins

Published in: Journal of Community Health | Issue 3/2017

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Abstract

Engaging underrepresented groups in outcomes research is a public health priority for reducing health and health care disparities; yet, engaging these groups is challenging. Failure to involve these underrepresented populations in research further exacerbates these disparities. This article presents the health and research priorities of diverse groups of underrepresented populations in biomedical research, their concerns for participating in research, and strategies to engage them in their healthcare and research studies. Eleven community listening sessions, ranging from 7 to 13 community members each (N = 117), representing racial/ethnic minority, economically disadvantaged (e.g., uninsured), and hearing impaired communities. We used an inductive, qualitative content analysis approach to analyze the data for emerging themes. We identified the following themes: Uncertainties of underrepresented populations regarding research participation; Ineffective communication about research opportunities and research findings; Research on primary care and prevention are priorities for underrepresented populations in research; and Research teams need training in cultural competence and humility. Underrepresented groups provided research priorities, concerns, and strategies to engage them in their healthcare and in research studies. Findings from this study could facilitate improvement of research participation among underrepresented groups, ultimately reducing health disparities and improving quality of life among groups commonly omitted from research recruitment and participation.
Literature
1.
go back to reference Adams-Campbell, L. L., Ahaghotu, C., Gaskins, M., et al. (2004). Enrollment of African Americans onto clinical treatment trials: study design barriers. Journal of Clinical Oncology, 22. doi:10.1200/jco.2004.03.160. Adams-Campbell, L. L., Ahaghotu, C., Gaskins, M., et al. (2004). Enrollment of African Americans onto clinical treatment trials: study design barriers. Journal of Clinical Oncology, 22. doi:10.​1200/​jco.​2004.​03.​160.
2.
go back to reference Allison, K. R., & Rottman, I. (1996). Scientific rigor and community participation in health promotion research: are they compatible? Health Promotion International, 2(4), 333–340.CrossRef Allison, K. R., & Rottman, I. (1996). Scientific rigor and community participation in health promotion research: are they compatible? Health Promotion International, 2(4), 333–340.CrossRef
3.
go back to reference Baird, K. L. (1999). The new NIH and FDA medical research policies: targeting gender, promoting justice. Journal of Health Politics, Policy and Law, 24(3), 531–565.CrossRefPubMed Baird, K. L. (1999). The new NIH and FDA medical research policies: targeting gender, promoting justice. Journal of Health Politics, Policy and Law, 24(3), 531–565.CrossRefPubMed
4.
go back to reference Baldwin, D. M. (2003). Disparities in health and health care: focusing efforts to eliminate unequal burdens. Online Journal of Issues in Nursing, 8(1), 2.PubMed Baldwin, D. M. (2003). Disparities in health and health care: focusing efforts to eliminate unequal burdens. Online Journal of Issues in Nursing, 8(1), 2.PubMed
6.
go back to reference Bonevski, B., Randell, M., Paul, et al. (2014). Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups. BMC Medical Research Methodology, 14(1), 1–29. doi:10.1186/1471-2288-14-42.CrossRef Bonevski, B., Randell, M., Paul, et al. (2014). Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups. BMC Medical Research Methodology, 14(1), 1–29. doi:10.​1186/​1471-2288-14-42.CrossRef
9.
go back to reference Congress, U. S. (1993). National Institutes of Health Revitalization Act of 1993: Act to Amend the Public Health Service Act to Revise and Extend the Programs of the National Institutes of Health, and for Other Purposes. Washington, D.C.: Public Law Washington. Congress, U. S. (1993). National Institutes of Health Revitalization Act of 1993: Act to Amend the Public Health Service Act to Revise and Extend the Programs of the National Institutes of Health, and for Other Purposes. Washington, D.C.: Public Law Washington.
10.
go back to reference Conway, T., Hu, T. C., & Harrington, T. (1997). Setting health priorities: community boards accurately reflect the preferences of the community’s residents. Journal of Community Health, 22(1), 57–68.CrossRefPubMed Conway, T., Hu, T. C., & Harrington, T. (1997). Setting health priorities: community boards accurately reflect the preferences of the community’s residents. Journal of Community Health, 22(1), 57–68.CrossRefPubMed
13.
go back to reference George, S., Duran, N., & Norris, K. (2014). A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders. American Journal of Public Health, 104, e16–e31.CrossRefPubMedPubMedCentral George, S., Duran, N., & Norris, K. (2014). A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders. American Journal of Public Health, 104, e16–e31.CrossRefPubMedPubMedCentral
15.
go back to reference Giuliano, A. R., Mokuau, N., Hughes, C., et al. (2000). Participation of minorities in cancer research: the influence of structural, cultural and linguistic factors. AEP, 10, S22–S34PubMed Giuliano, A. R., Mokuau, N., Hughes, C., et al. (2000). Participation of minorities in cancer research: the influence of structural, cultural and linguistic factors. AEP, 10, S22–S34PubMed
16.
go back to reference Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine Pub Co. Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine Pub Co.
17.
go back to reference Goldberg-Freeman, C., Kass, N. E., Tracey, P., et al. (2007). “You’ve got to understand community”: community perceptions on “breaking the disconnect” between researchers and communities. Progress in Community Health Partnerships, 1(3), 231–240. doi:10.1353/cpr.2007.0021.CrossRefPubMed Goldberg-Freeman, C., Kass, N. E., Tracey, P., et al. (2007). “You’ve got to understand community”: community perceptions on “breaking the disconnect” between researchers and communities. Progress in Community Health Partnerships, 1(3), 231–240. doi:10.​1353/​cpr.​2007.​0021.CrossRefPubMed
19.
20.
go back to reference Kauffman, K. S., Dosreis, S., Ross, M., Barnet, B., Onukwugha, E., & Mullins, C. D. (2013). Engaging hard-to-reach patients in patient-centered outcomes research. Journal of Comparative Effectiveness Research, 2(3), 313–324. doi:10.2217/cer.13.11.CrossRefPubMed Kauffman, K. S., Dosreis, S., Ross, M., Barnet, B., Onukwugha, E., & Mullins, C. D. (2013). Engaging hard-to-reach patients in patient-centered outcomes research. Journal of Comparative Effectiveness Research, 2(3), 313–324. doi:10.​2217/​cer.​13.​11.CrossRefPubMed
21.
go back to reference Killien, M., Bigby, J. A., Champion, V., et al. (2000). Involving minority and underrepresented women in clinical trials: the National Centers of Excellence in Women’s Health. Journal of Women’s Health & Gender-Based Medicine, 9(10), 1061–1070. doi:10.1089/152460900445974.CrossRef Killien, M., Bigby, J. A., Champion, V., et al. (2000). Involving minority and underrepresented women in clinical trials: the National Centers of Excellence in Women’s Health. Journal of Women’s Health & Gender-Based Medicine, 9(10), 1061–1070. doi:10.​1089/​152460900445974.CrossRef
22.
go back to reference Koniak-Griffin, D., Brecht, M. L., Takayanagi, S., Villegas, J., Melendrez, M., & Balcazar, H. (2015). A community health worker-led lifestyle behavior intervention for Latina (Hispanic) women: feasibility and outcomes of a randomized controlled trial. International Journal of Nursing Studies, 52(1), 75–87. doi:10.1016/j.ijnurstu.2014.09.005.CrossRefPubMed Koniak-Griffin, D., Brecht, M. L., Takayanagi, S., Villegas, J., Melendrez, M., & Balcazar, H. (2015). A community health worker-led lifestyle behavior intervention for Latina (Hispanic) women: feasibility and outcomes of a randomized controlled trial. International Journal of Nursing Studies, 52(1), 75–87. doi:10.​1016/​j.​ijnurstu.​2014.​09.​005.CrossRefPubMed
23.
go back to reference Locock, L., & Smith, L. (2011a). Personal experiences in taking part in clinical trials: A qualitative study. Patient Education and Counseling, 84, 303–309.CrossRefPubMed Locock, L., & Smith, L. (2011a). Personal experiences in taking part in clinical trials: A qualitative study. Patient Education and Counseling, 84, 303–309.CrossRefPubMed
24.
27.
go back to reference Schlling, J. (2006). On the pragmatics of qualitative assessment. European Journal of Psychological Assessment, 22(1), 28–37.CrossRef Schlling, J. (2006). On the pragmatics of qualitative assessment. European Journal of Psychological Assessment, 22(1), 28–37.CrossRef
28.
go back to reference Sung, N. S., Crowley, W. F. Jr., Genel, M., et al. (2003). Central challenges facing the national clinical research enterprise. JAMA, 289(10), 1278–1287.CrossRefPubMed Sung, N. S., Crowley, W. F. Jr., Genel, M., et al. (2003). Central challenges facing the national clinical research enterprise. JAMA, 289(10), 1278–1287.CrossRefPubMed
29.
go back to reference Swanson, G. M., & Ward, A. J. (1995). Recruiting minorities into clinical trials: toward a participant-friendly system. Journal of the National Cancer Institute, 87. doi:10.1093/jnci/87.23.1747. Swanson, G. M., & Ward, A. J. (1995). Recruiting minorities into clinical trials: toward a participant-friendly system. Journal of the National Cancer Institute, 87. doi:10.​1093/​jnci/​87.​23.​1747.
32.
go back to reference Wallerstein, N. B., & Duran, B. (2006). Using community-based participatory research to address health disparities. Health Promotion Practice, 7(3), 312–323.CrossRefPubMed Wallerstein, N. B., & Duran, B. (2006). Using community-based participatory research to address health disparities. Health Promotion Practice, 7(3), 312–323.CrossRefPubMed
33.
go back to reference Wallerstein, N. B., & Duran, B. (2010). Community-based participatory research contributions to intervention research: The intersection of science and practice to improve health equity. American Journal of Public Health, 100(1), S40–S46.CrossRefPubMedPubMedCentral Wallerstein, N. B., & Duran, B. (2010). Community-based participatory research contributions to intervention research: The intersection of science and practice to improve health equity. American Journal of Public Health, 100(1), S40–S46.CrossRefPubMedPubMedCentral
Metadata
Title
Needs, Priorities, and Recommendations for Engaging Underrepresented Populations in Clinical Research: A Community Perspective
Authors
Jennifer Cunningham Erves
Tilicia L. Mayo-Gamble
Alecia Malin-Fair
Alaina Boyer
Yvonne Joosten
Yolanda C. Vaughn
Lisa Sherden
Patrick Luther
Stephania Miller
Consuelo H. Wilkins
Publication date
01-06-2017
Publisher
Springer US
Published in
Journal of Community Health / Issue 3/2017
Print ISSN: 0094-5145
Electronic ISSN: 1573-3610
DOI
https://doi.org/10.1007/s10900-016-0279-2

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