The partnership addressing differences in sleep disorder burden is supported by the knowledge, expertise, and trust we have built within the community. We developed the proposal through consultation with our initial Community Steering Committee (CSC), composed of representatives from community-based organizations and patients with sleep apnea.
The focus on sleep disorders was determined through engagement with CSC members, who participated in community health lectures in 2010. They were asked to identify the most pressing health concerns and policy issues using a Delphi survey, which identified sleep disorders as a high research priority. This led to the New York Sleep Health Summit in 2012, bringing together experts in sleep research and stakeholders to discuss implementation of novel interventions to improve sleep outcomes in their communities. During proposal development, we held weekly meetings with the CSC to build consensus around project aims, define the contributions of each partner, and clarify leadership roles and expectations. This process produced the Shared Sleep Research Agenda, calling for assessment of sleep disorder severity across communities in New York City.
Building this collaborative capacity to conduct people-centered outcomes research has been critical for recruitment into ongoing and planned studies. The partnership enables more rapid translation of behavioral research findings into interventions that support healthy aging. Equally important, this infrastructure expands research capacity to study sleep disorders across diverse populations and provides a model for translating behavioral science research with appropriate cultural and linguistic considerations. The ongoing project leverages the CSC established in New York and South Florida to maintain the cohort developed over the last two years. It also utilizes a newly constituted CSC in Miami to facilitate recruitment of an additional cohort to meet enrollment goals (see below).
TSCS Community Stakeholder Groups
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Trinity Baptist Church and Blanc Ministries (TBCBM)
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Inspire LLC
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Bethel Evangelical Baptist Church (BEBC)
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Association of Haitian Physicians Abroad (AMHE)
NYU CSC Members
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Haitian-American Community Coalition (HCC)
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Greater Brooklyn Health Coalition (GBHC)
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Diaspora Community Services (DCS)
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Youth Ministries for Peace and Justice (YMPJ)
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The Haitian American Alliance of New York (HAA)