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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
  • Tilicia Mayo-Gamble, Georgia Southern University, Jiann-Ping Hsu College of Public Health
  • Velma McBride Murry, Vanderbilt University
  • Jennifer Cunningham-Erves, Meharry Medical College
  • Robert M. Cronin, Vanderbilt University
  • Nabilah Lari, Alteon Health
  • Alexis Gorden, Sickle Cell Foundation of Tennessee
  • Lametra Scott, Breaking the SSCycle Foundation
  • Michael R. Debaun, Vanderbilt-Meharry Center for Excellence in Sickle Cell Disease
  • Trevor Thompson, Sickle Cell Foundation of Tennessee
Document Type
Article
Publication Date
2-1-2020
DOI
10.1353/hpu.2020.0027
Abstract

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.

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Copyright © 2020 Meharry Medical College

Citation Information
Tilicia Mayo-Gamble, Velma McBride Murry, Jennifer Cunningham-Erves, Robert M. Cronin, et al.. "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 Vol. 31 Iss. 1 (2020) p. 353 - 369 ISSN: 1548-6869
Available at: http://works.bepress.com/tilicia-mayo-gamble/50/