Engaging Individuals with Sickle Cell Disease in Patient-Centered Outcomes Research: A Community Health Ambassador Training Model
Journal of Health Care for the Poor and Underserved
Developing innovative strategies to engage patients as research partners is a priority in efforts to reduce health disparities in underserved communities. We describe the development and implementation of a training model to prepare Community Health Ambassadors (CHAs) to serve as liaisons to engage individuals with sickle cell disease (SCD) in patient-centered outcomes research. We trained CHAs on research guidelines, human subjects' protection, and SCD self-management. Community Health Ambassadors then employed community-level strategies to engage individuals with SCD and their families (N=432) residing in rural and urban communities throughout Tennessee. By engaging the SCD community, CHAs identified areas of burden for self-management and patientpreferred strategies to engage members of underserved minority groups in research. This community-based training model, which places CHAs as liaisons between researchers and [End Page 353] the community, holds promise for scaling-up for replication and implementation in studies seeking to engage underserved populations with a chronic disease in health research.
Mayo-Gamble, Tilicia, Velma McBride Murry, Jennifer Cunningham-Erves, Robert M. Cronin, Nabilah Lari, Alexis Gorden, Lametra Scott, Michael R. Debaun, Trevor Thompson.
"Engaging Individuals with Sickle Cell Disease in Patient-Centered Outcomes Research: A Community Health Ambassador Training Model."
Journal of Health Care for the Poor and Underserved, 31 (1): 353-369: Johns Hopkins University Press.
doi: 10.1353/hpu.2020.0027 source: https://muse.jhu.edu/article/747793