A Case Study of Engaging Hard‐to‐Reach Participants in the Research Process: Community Advisors on Research Design and Strategies (CARDS)®

Abstract

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.

Making Dissertations Publishable

“…Flyers and posters alone rarely are effective, and many months are wasted while waiting. Active outreach, physical presence, and vetting recruitment and consent materials for cultural relevance and appeal (Kaiser, Thomas, & Bowers, ) are important. Require that the student perseveres to achieve the planned sample size and follow‐up time. Claims of lack of time and resources do not make weak studies more acceptable to reviewers. Before data analysis is completed, discuss publication plans.…”

“…Flyers and posters alone rarely are effective, and many months are wasted while waiting. Active outreach, physical presence, and vetting recruitment and consent materials for cultural relevance and appeal (Kaiser, Thomas, & Bowers, 2016) are important. 10.…”

Clarifying the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research: A collaborative rapid realist review process

“…The eight study was from the UK that explored differences between what seldom heard groups prioritize in health from mainstream views Case studies: Three in total including a US case study article on how to diversify participants in clinical research; a UK study presenting participatory action research between patients and emergency department staff to improve palliative care experiences . The third article presented three case studies from Australia highlighting learnings in research with highly marginalized young people …”

Tailored Explanation: A Strategy to Minimize Nonresponse in Demographic Items Among Low-Income Racial and Ethnic Minorities

“…In brief, the CARDS® is a community group of generally low income, high unemployment, and primarily ethnic and racial minority individuals (Kaiser, Thomas, and Bowers in press). Using materials from a previously completed study of heart failure, participants were asked to assess their likelihood of responding positively to recruiting materials, consenting to participate in the study and responding accurately to demographic items if they were actually enrolled in the study.…”