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

Authors

• Tilicia Mayo-Gamble, Georgia Southern University, Jiann-Ping Hsu College of Public HealthFollow
• Velma McBride Murry, Vanderbilt UniversityFollow
• Jennifer Cunningham-Erves, Meharry Medical CollegeFollow
• Robert M. Cronin, Vanderbilt UniversityFollow
• Nabilah Lari, Alteon HealthFollow
• Alexis Gorden, Sickle Cell Foundation of TennesseeFollow
• Lametra Scott, Breaking the SSCycle Foundation
• Michael R. Debaun, Vanderbilt-Meharry Center for Excellence in Sickle Cell DiseaseFollow
• Trevor Thompson, Sickle Cell Foundation of TennesseeFollow

Document Type

Article

Publication Date

2-2020

Publication Title

Journal of Health Care for the Poor and Underserved

DOI

10.1353/hpu.2020.0027

ISSN

1548-6869

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.

Comments

Copyright © 2020 Meharry Medical College

Recommended Citation

Mayo-Gamble, Tilicia, Velma McBride Murry, Jennifer Cunningham-Erves, Robert M. Cronin, Nabilah Lari, Alexis Gorden, Lametra Scott, Michael R. Debaun, Trevor Thompson. 2020. "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
https://digitalcommons.georgiasouthern.edu/hpmb-facpubs/174

Copyright

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