A novel approach to research engagement: Developing a targeted theory of change with Black and African-American stakeholders.

IF 2.1 Q3 MEDICINE, RESEARCH & EXPERIMENTAL Journal of Clinical and Translational Science Pub Date : 2024-10-07 eCollection Date: 2024-01-01 DOI:10.1017/cts.2024.610
Helen Hemley, Juliana M Ison, Marissa Reynolds, Tiffany Pham, Jonathan D Jackson
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Abstract

Purpose: Community inclusion in research may increase the quality and relevance of research, but doing so in an equitable way is complex. Novel approaches used to build engagement with historically marginalized communities in other sectors may have relevance in the clinical research sector.

Method: To address long-standing gaps and challenges, a stakeholder group was convened to develop a theory of change (ToC), a structured method for obtaining input from stakeholders to enhance the design, conduct, and dissemination of research. The stakeholder group, comprised of Black residents within a metropolitan area, followed a structured monthly meeting schedule for 12 months to produce an outcome map, a model that formally defines aspects of research and engagement for this community.

Results: Stakeholders reported significant improvements in trust in and engagement with research over the 12-month period, but not changes in health empowerment (individual, organizational, or community level). Through this convening process, a ToC and outcome map were developed with the focus of building bidirectional relationships between groups identifying as Black, Indigenous, and People of Color (BIPOC) and researchers in Boston, MA. Additionally, the group developed a community ownership model and guidelines for researchers to adhere to when utilizing the ToC and outcome map with BIPOC communities.

Conclusion: Co-ownership of models to develop bidirectional relationships between researchers and community members, such as the ToC and outcome map, may advance and further the value and reach of community-based participatory research while increasing levels of trust and engagement in research.

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研究参与的新方法:与黑人和非裔美国人利益相关者共同制定有针对性的变革理论。
目的:将社区纳入研究可提高研究的质量和相关性,但以公平的方式做到这一点非常复杂。在其他行业中,用于与历史上被边缘化的社区建立联系的新方法可能适用于临床研究领域:为了解决长期存在的差距和挑战,我们召集了一个利益相关者小组,以制定变革理论 (ToC),这是一种结构化的方法,用于从利益相关者那里获取意见,以加强研究的设计、开展和传播。该利益相关者小组由一个大都市地区的黑人居民组成,在 12 个月的时间里,他们按照结构化的月度会议计划,绘制了一张成果图,这是一个正式定义该社区研究和参与方面的模型:结果:利益相关者报告称,在 12 个月的时间里,他们对研究的信任度和参与度有了明显提高,但在健康赋权方面(个人、组织或社区层面)却没有发生变化。通过这一召集过程,制定了一个 ToC 和成果图,重点是在马萨诸塞州波士顿市被认定为黑人、土著人和有色人种 (BIPOC) 的群体与研究人员之间建立双向关系。此外,该小组还开发了一个社区所有权模型,并为研究人员在与黑人、土著和有色人种(BIPOC)社区共同使用 ToC 和成果图时提供了指导原则:结论:在研究人员和社区成员之间建立双向关系的共同所有权模式(如 ToC 和成果图),可以在提高研究的信任度和参与度的同时,提升和扩大基于社区的参与式研究的价值和范围。
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来源期刊
Journal of Clinical and Translational Science
Journal of Clinical and Translational Science MEDICINE, RESEARCH & EXPERIMENTAL-
CiteScore
2.80
自引率
26.90%
发文量
437
审稿时长
18 weeks
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