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A Case Study of Engaging Hard‐to‐Reach Participants in the Research Process: Community Advisors on Research Design and Strategies (CARDS)®
Author(s) -
Kaiser Betty L.,
Thomas Gay R.,
Bowers Barbara J.
Publication year - 2017
Publication title -
research in nursing and health
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.836
H-Index - 85
eISSN - 1098-240X
pISSN - 0160-6891
DOI - 10.1002/nur.21753
Subject(s) - diversity (politics) , general partnership , medical education , health equity , population , community based participatory research , research design , participatory action research , psychology , literacy , research center , community engagement , public relations , nursing , medicine , sociology , public health , political science , pedagogy , social science , environmental health , pathology , anthropology , law
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.