A Case Study of Engaging Hard-to-Reach Participants in the Research Process: Community Advisors on Research Design and Strategies (CARDS)®.
Lack of diversity among study participants in clinical research limits progress in eliminating health disparities. The engagement of lay stakeholders, such as patient or community advisory boards (CABs), has the potential to increase recruitment and retention of underrepresented groups by providing a structure for gathering feedback on research plans and materials from this target population. However, many CABs intentionally recruit prominent stakeholders who are connected to or comfortable with research and academia and thus may not accurately represent the perspectives of underrepresented groups who have been labeled hard-to-reach, including racial minorities and low-income or low-literacy populations. We developed a partnership between the University of Wisconsin-Madison School of Nursing and two community centers to deliberately engage hard-to-reach people in two lay advisory groups, the Community Advisors on Research Design and Strategies (CARDS)®. Community center staff recruited the CARDS from center programs, including parenting and childcare programs, women's support groups, food pantries, and senior meal programs. The CARDS model differs from other CABs in its participants, processes, and outcomes. Since 2010, the CARDS have met monthly with nurses and other researchers, helping them understand how research processes and the language, tone, appearance, and organization of research materials can discourage people from enrolling in clinical studies. We have successfully used the CARDS model to bring hard-to-reach populations into the research process and have sustained their participation. The model represents a promising strategy for increasing the diversity of participants in clinical research. © 2016 Wiley Periodicals, Inc.
Administrative Program Specialist, School of Nursing, University of Wisconsin-Madison, 701 Highland Ave., Rm. 5138, Madison, WI 53705.
Betty L
BL
Kaiser
Senior Administrative Program Specialist, School of Nursing, University of Wisconsin-Madison, Madison, WI.
Gay R
GR
Thomas
Professor, School of Nursing, University of Wisconsin-Madison, Madison, WI.
Barbara J
BJ
Bowers
D026683:Advisory Committees; D035843:Biomedical Research / Q000379:methods*; D003256:Community Participation; D005006:Ethnicity; D054625:Healthcare Disparities; D006801:Humans; D018579:Patient Selection; D012107:Research Design; D012108:Research Personnel; D035862:Vulnerable Populations
advisory committees; healthcare disparities; stakeholder engagement; subject recruitment; vulnerable populations
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