Toward a Framework to Improve Diversity and Inclusion in Clinical Trials Proceedings of a Workshop (2025) / Chapter Skim
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2 Community Engagement and Investment
2 Community Engagement and Investment
Pages 9-20
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• Successful community engagement should be non-transactional. (Watson)
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They are not intended to reflect a con sensus among workshop participants. Panelists explored strategies for improving diversity and inclusion in clinical trials, including approaches to overcome the challenges hindering representative participation and to reduce the burdens of conducting inclusive trials.
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Doing better, Watson concluded, means establishing equitable research partnerships and investing in communities. This includes the following: • developing a clinical research workforce that better reflects the populations most impacted by the disease or condition being studied; 1 Now referred to as the "USPHS Untreated Syphilis Study at Tuskegee." See https://www.
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WPHW is a member of the R esearch Electronic Data Capture (REDCap) Consortium, a clinical research data management platform to share expertise between organizations to support basic science research studies, clinical trial data collection, patient questionnaires, clinical decision support, and operational support.3 However, Cammack noted that infrastructure barriers, such as limited access to computers and the Internet, require carefully thought-out approaches to engage communities, particularly when it comes to health data.
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Cammack emphasized that "words do matter." For example, community members who are conducting interviews for a study of A lzheimer's disease and dementia are called "community researchers" rather than "community interviewers." Cammack pointed out that "our people were the first researchers of that land, the first evaluators. We've been here for thousands and thousands of years." COMMUNITY HEALTH THROUGH CHURCH INITIATIVES Matthew Watley, senior pastor at Kingdom Fellowship AME Church in Calverton, MD, described some of the support services the church provides to the community to help address social determinants of health, including a food pantry, waiting areas for children, and health care services provided via a memorandum of understanding with Holy Cross Hospital.
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program of the NCI Center to Reduce Cancer Health Disparities.5 Initiatives also focus on workforce diversity, including the Robert Winn Career Development Award,6 which supports training for early-stage physicians to conduct clinical research including trial implementation and evaluation. The awardees, who are from diverse backgrounds, also receive training on the science of community engagement through workshops held by M orehouse and ongoing mentoring after they return to their communities.
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INCLUSIVE RESEARCH BEYOND ENROLLMENT Watson shared that one of the first considerations for community engagement is changing the definition of success. Clinical trial enrollment is only one metric.
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Rivers concurred with Watson that community organizations that support diverse enrollment in clinical trials should be recognized and compensated as partners, not just subawardees. People pay attention to the news and notice when "the grant was $5 million" but a church is offered "$500 to attend three meetings." He noted that "when the dollars flow, capacity is developed, and the needle will move." THE ROLE OF FAITH-BASED ORGANIZATIONS Mendoza asked panelists to comment specifically on the role of churches and faith-based organizations in engaging diverse populations in clinical research Watley said the church serves many functions beyond Sunday worship in the African American community.
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Rivers agreed that churches and faith-based organizations offer "a tremendous opportunity for engagement." He described receiving a $100,000 supplemental award from NIH during the pandemic to help address "the breakdowns in community capacities to actually participate effectively in clinical research." After consultation with community partners, Morehouse issued $10,000 microgrants to 10 churches in the Albany, Georgia, area, where disparities in COVID-19 outcomes were substantial. This facilitated education and awareness campaigns and training health ministry leaders as navigators to connect community members to local health services and opportunities to participate in clinical research.
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Students can influence their families by sharing that information at home. Similarly, Rivers shared that Melissa Davis at Morehouse is beginning a multigenerational educational program to address health inequities in cancer genomics, which includes training high school students to be community health navigators who can inform family members about the value of genomic testing and participation in clinical trials.10 Moses also suggested developing ambassador programs for clinical trials.
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Community members should be "involved in all of the processes so you're educating them and enlightening them on what's happening and truly treating them like they're partners." Watley added that many people, for better or worse, rely on social media as their primary source of information. However, social media influencers are not necessarily equipped to impart key health information.
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