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J Health Care Poor Underserved ; 31(1): 353-369, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32037336

RESUMO

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.


Assuntos
Anemia Falciforme , Agentes Comunitários de Saúde/educação , Avaliação de Resultados da Assistência ao Paciente , Adulto , Serviços de Saúde Comunitária , Pesquisa Participativa Baseada na Comunidade , Educação/organização & administração , Feminino , Humanos , Masculino , Área Carente de Assistência Médica , Pessoa de Meia-Idade , Tennessee , Adulto Jovem
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