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Improving the Lives of People with Sickle Cell Disease: Community Organizations and Epidemiologists Working Together
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2024
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Source: Prog Community Health Partnersh. 18(3):371-380
[PDF-492.84 KB]
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Alternative Title:Prog Community Health Partnersh
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Description:Background:
CDC’s Sickle Cell Data Collection program comprises multidisciplinary teams, which include community-based organizations. Partnering with CBOs is a novel approach to ensure that SCDC data is actionable.
Objective:
To better understand areas for mutual capacity building, we explored the relationships and dynamics between CBO and data teams within the SCDC program in 10 states.
Methods:
We conducted semi-structured interviews with CBO (n=13) and SCDC (n=10) participants and then categorized and compared text from each interview and across states. Six themes emerged.
Lessons Learned:
Transparency and trust are essential. Early CBO engagement and leadership are needed for trust and agreed upon priorities.
Conclusions:
Participants contextualized trust, the most prominent theme, within discussions of racism and health inequities. Relationships between the CBO and data teams bring hard data and human experience together for advocacy, education, improved care, and a platform for the SCD voice.
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Pubmed ID:39308381
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Pubmed Central ID:PMC11424017
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Volume:18
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Issue:3
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