Improving the Lives of People with Sickle Cell Disease: Community Organizations and Epidemiologists Working Together.

IF 0.8 4区医学 Q4 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Progress in Community Health Partnerships-Research Education and Action Pub Date : 2024-01-01

Amanda J Young, Amanda Maresh, Shammara Pope, Rae Blaylark, Sangeetha Lakshmanan, L'Oreal Stephens, Rebecca Aderojou, Emily Meier, Gary Gibson, Amanda Okolo, Shamaree Cromartie, Niani Coker, Susan Paulukonis, Jennifer Fields, Mandip Kaur, Jay Desai

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Abstract

Background: The Centers for Disease Control and Prevention's Sickle Cell Data Collection (SCDC) program comprises multidisciplinary teams, which include community-based organizations. Partnering with community-based organizations (CBOs) is a novel approach to ensure that SCDC data are 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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改善镰状细胞病患者的生活：社区组织与流行病学家携手合作。

背景：美国疾病控制与预防中心的镰状细胞数据收集（SCDC）项目由多学科团队组成，其中包括社区组织。与社区组织（CBO）合作是确保 SCDC 数据具有可操作性的一种新方法：为了更好地了解双方能力建设的领域，我们探讨了 10 个州的 SCDC 项目中 CBO 与数据团队之间的关系和动态：我们对 CBO（n = 13）和 SCDC（n = 10）的参与者进行了半结构化访谈，然后对每次访谈和各州的访谈内容进行了分类和比较。得出了六个主题：透明度和信任至关重要。需要社区组织的早期参与和领导，以建立信任并就优先事项达成一致：参与者在讨论种族主义和健康不平等问题时，将信任这一最突出的主题与背景联系起来。社区组织和数据团队之间的关系将硬数据和人类经验结合在一起，以促进宣传、教育、改善护理，并为 SCD 提供发言平台。

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Progress in Community Health Partnerships-Research Education and Action PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH-

CiteScore

1.30

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0.00%

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