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本文引用的文献

1
Surveillance for Sickle Cell Disease - Sickle Cell Data Collection Program, Two States, 2004-2018.镰状细胞病监测 - 镰状细胞数据收集项目，两个州，2004-2018 年。
MMWR Surveill Summ. 2022 Oct 7;71(9):1-18. doi: 10.15585/mmwr.ss7109a1.
2
Equitable Partnerships between Community-Based and Traditional Public Health Organizations: Recommendations from the Field.社区为基础的公共卫生组织与传统公共卫生组织之间的公平伙伴关系：来自实地的建议。
Prog Community Health Partnersh. 2022;16(3):445-450. doi: 10.1353/cpr.2022.0060.
3
"We're already doing this work": ethical research with community-based organizations.“我们已经在做这项工作了”：基于社区组织的伦理研究。
BMC Med Res Methodol. 2022 Sep 2;22(1):237. doi: 10.1186/s12874-022-01713-7.
4
Practicing Hope: Enhancing Empowerment in Primary Health Care through Community-based Participatory Research.践行希望：通过基于社区的参与性研究增强初级卫生保健中的赋权
Am J Community Psychol. 2021 Jun;67(3-4):297-311. doi: 10.1002/ajcp.12526. Epub 2021 Jun 11.
5
Community-based organizations' perspectives on improving health and social service integration.社区组织改善健康和社会服务整合的观点。
BMC Public Health. 2021 Mar 6;21(1):452. doi: 10.1186/s12889-021-10449-w.
6
Enhancing Capacity of Community-Academic Partnerships to Achieve Health Equity: Results From the CBPR Partnership Academy.增强社区-学术伙伴关系的能力以实现健康公平：基于 CBPR 伙伴关系学院的研究结果。
Health Promot Pract. 2020 Jul;21(4):552-563. doi: 10.1177/1524839918818830. Epub 2018 Dec 29.
7
Pediatric sickle cell disease: past successes and future challenges.小儿镰状细胞病：过去的成就与未来的挑战。
Pediatr Res. 2017 Jan;81(1-2):249-258. doi: 10.1038/pr.2016.204. Epub 2016 Oct 5.
8
A realist evaluation of community-based participatory research: partnership synergy, trust building and related ripple effects.基于社区参与式研究的现实主义评价：伙伴关系协同效应、信任建立及相关连锁反应。
BMC Public Health. 2015 Jul 30;15:725. doi: 10.1186/s12889-015-1949-1.
9
The Measure of Sickle Cell Stigma: Initial findings from the Improving Patient Outcomes through Respect and Trust study.镰状细胞病污名化的衡量：通过尊重和信任改善患者结局研究的初步结果
J Health Psychol. 2016 May;21(5):808-20. doi: 10.1177/1359105314539530. Epub 2014 Jul 4.
10
Mortality rates and age at death from sickle cell disease: U.S., 1979-2005.镰状细胞病的死亡率和死亡年龄：美国，1979-2005 年。
Public Health Rep. 2013 Mar-Apr;128(2):110-6. doi: 10.1177/003335491312800206.

提高镰状细胞病患者的生活质量：社区组织与流行病学家携手合作。

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

出版信息

Prog Community Health Partnersh. 2024;18(3):371-380.

PMID:39308381
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11424017/
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.

摘要

背景

疾病控制与预防中心的镰状细胞数据收集（SCDC）计划由多学科团队组成，其中包括社区组织。与社区组织（CBO）合作是确保 SCDC 数据可操作的一种新方法。

目的

为了更好地了解共同能力建设的领域，我们探索了 10 个州的 SCDC 计划中 CBO 和数据团队之间的关系和动态。

方法

我们对 CBO（n=13）和 SCDC（n=10）参与者进行了半结构化访谈，然后对每个访谈和各州的文本进行了分类和比较。出现了六个主题。

经验教训

透明度和信任至关重要。需要早期的 CBO 参与和领导力，以建立信任和商定的优先事项。

结论

参与者在讨论种族主义和健康不平等问题时将信任（最突出的主题）置于背景之中。CBO 和数据团队之间的关系将硬数据和人类经验结合在一起，用于宣传、教育、改善护理和为 SCD 声音提供平台。