Engaging Individuals with Sickle Cell Disease in Patient-Centered Outcomes Research: A Community Health Ambassador Training Model

• Published in: Journal of health care for the poor and underserved Vol. 31; no. 1; pp. 353 - 369
• Main Authors: Mayo-Gamble, Tilicia L, Murry, Velma McBride, Cunningham-Erves, Jennifer, Cronin, Robert Michael, Lari, Nabilah, Gorden, Alexis, Scott, Lametra, DeBaun, Michael R, Thompson, Trevor
• Format: Journal Article
• Language: English
• Published: United States Johns Hopkins University Press 01.02.2020
• Subjects: Adult; African Americans; Anemia, Sickle Cell; Caregivers; Chronic illnesses; Clinical trials; Community health; Community health care; Community Health Services; Community Health Workers - education; Community-Based Participatory Research; Diplomatic & consular services; Education - organization & administration; Female; Health; Health disparities; Health status; Human subjects; Humans; Leadership; Low income groups; Male; Marginalized groups; Medical research; Medically Underserved Area; Middle Aged; Minority & ethnic groups; Minority groups; Participatory research; Patient Outcome Assessment; Patient-centered care; Research subjects; Rural areas; Rural communities; Selfmanagement; Sickle cell disease; Tennessee; Training; Underserved populations; Urban areas; Young Adult; Tennessee; United States > US
• ISSN: 1049-2089; 1548-6869; 1548-6869
• DOI: 10.1353/hpu.2020.0027

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 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.