Jornal de Distúrbios do Sono e Terapia
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Strategies to Engage Blacks in Sleep Medicine: Lessons Learned from Three Studies Applying Community-Based Participatory Research Principles

April Rogers, M.D, MPH, MBA1, Alicia Chung, Ed.D2, Azizi Seixas, Ph.D3,4, Debbie Chung, Ph.D4, Freddy Zizi, MBA4, Girardin Jean-Louis, Ph.D4

Introduction: Awareness, assessment and treatment of sleep apnea are disproportionately lower among Blacks, compared to other racial/ethnic groups. To address this health disparity gap, communication strategies that connect Blacks to OSA education, detection and treatment adherence interventions are needed. Strategies that engage individuals through communication technologies, community-level social network support, and medical providers in clinical settings are also needed. We present lessons learned from three studies that offer these solutions using a community-engaged research model: The Metabolic Syndrome Outcome Study (MetSO), Peer-enhanced Education to Reduce Sleep Ethnic Disparities (PEERS-ED), and Tailored Approach to Sleep Health Education (TASHE), to capture program effectiveness and lessons learned from project successes and failures.

Methods: The methods of OSA community-based programs included the application of an OSA community-engaged research model. This model served as a strategic guideline for effective interventions to engage communities in research and ensure cultural appropriateness in OSA interventions. Focus groups, in-depth interviews and community steering committee meetings were conducted with various stakeholders. Delphi surveys were used to identify high priority diseases and conditions. Community barriers and needs were identified through iterative combinations of surveys and focus group meetings. Stakeholder groups participated in all aspects of our studies, including the development, dissemination and implementation phases, reflecting a bi-directional decision-making process that ensures the interests of both parties were considered. The MetSO, PEERS-ED and TASHE studies were reviewed to understand the effectiveness of the programs and to evaluate lessons learned.

Results: MetSO, PEERS-ED and TASHE interventions revealed that community-engaged strategies are successful in enrolling Black populations into clinical trials. The study teams reached nearly 3,000 Blacks at risk of OSA and screened about 2,000 people in sleep apnea studies in New York City. Sleep brochures were distributed to over 10,000 people. Lessons learned from MetSO, PEERS-ED and TASHE interventions revealed that building relationships, establishing trust, identifying a study champion, learning to adjust and providing participant incentives are key strategic elements for successful recruitment and retention of Blacks participations in clinical trials.

Conclusion: Strategic application of community-oriented frameworks ensures active community engagement throughout the research process, allowing for greater enrollment of Blacks in clinical studies as well as increased OSA awareness, diagnosis, and treatment.