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

J Health Care Poor Underserved. 2020;31(1):353-369. 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 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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Anemia, Sickle Cell*
  • Community Health Services
  • Community Health Workers / education*
  • Community-Based Participatory Research
  • Education / organization & administration
  • Female
  • Humans
  • Male
  • Medically Underserved Area
  • Middle Aged
  • Patient Outcome Assessment*
  • Tennessee
  • Young Adult