Community Engagement in Precision Medicine Research: Organizational Practices and Their Impacts for Equity.
Community Engagement in Precision Medicine Research: Organizational Practices and Their Impacts for Equity.
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社区参与精准医学研究：组织实践及其对公平的影响。
DOI：
10.1080/23294515.2023.2201478
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发表时间：
2023
影响因子：
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通讯作者：
Lee,SandraSoo-Jin
中科院分区：
文献类型：
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作者：
Shim,JanetK;Foti,Nicole;Vasquez,Emily;Fullerton,StephanieM;Bentz,Michael;Jeske,Melanie;Lee,SandraSoo-Jin
BackgroundIn生物医学研究的任务，以增加参与的成员，历史上代表性不足的人口，社区参与（CE）已成为一个关键的干预，以帮助实现这一目标。MethodsUsing访谈，观察，和文件分析，我们研究利益相关者在精准医学研究如何理解和寻求付诸实践的想法，谁参与，如何参与应该进行，和什么样的参与是。ResultsWe发现，特设的，机会主义的，和工具的方法，CE的时间和资源投入到参与和最终的影响，它对研究产生了重大后果。当参与和研究决策相互整合与平行发生时，出现了关键的差异，研究组织的独立部分，以及社区成员是否有能力确定哪些问题将提交给他们考虑，或者修改甚至否决基于对他们重要的标准的上游提案。据了解，行政长官有一系列的目的，从工具促进招聘和数据收集，以推进社区的优先事项和关注，以促进长期投资的关系和社区的变化。这些关于谁参与，支持什么参与活动，如何征求和整合社区投入到研究的工作流程中，以及CE是什么的选择通常取决于预先存在的看法和关于研究目标，竞争优先事项，关于CE的上游选择以及时间和资源的限制级联成权衡，通常最终导致“哑剧社区参与”这种方法可能会造成下游成本时，接触经验的即兴和零星的。CE被视为必要的科学投资和科学过程的一部分，需要进行变革。
BackgroundIn the wake of mandates for biomedical research to increase participation by members of historically underrepresented populations, community engagement (CE) has emerged as a key intervention to help achieve this goal.MethodsUsing interviews, observations, and document analysis, we examine how stakeholders in precision medicine research understand and seek to put into practice ideas about who to engage, how engagement should be conducted, and what engagement is for.ResultsWe find that ad hoc, opportunistic, and instrumental approaches to CE exacted significant consequences for the time and resources devoted to engagement and the ultimate impacts it has on research. Critical differences emerged when engagement and research decisionmaking were integrated with each other versus occurring in parallel, separate parts of the study organization, and whether community members had the ability to determine which issues would be brought to them for consideration or to revise or even veto proposals made upstream based on criteria that mattered to them. CE was understood to have a range of purposes, from instrumentally facilitating recruitment and data collection, to advancing community priorities and concerns, to furthering long-term investments in relationships with and changes in communities. These choices about who to engage, what engagement activities to support, how to solicit and integrate community input into the workflow of the study, and what CE was for were often conditioned upon preexisting perceptions and upstream decisions about study goals, competing priorities, and resource availability.ConclusionsUpstream choices about CE and constraints of time and resources cascade into tradeoffs that often culminated in “pantomime community engagement.” This approach can create downstream costs when engagement is experienced as improvised and sporadic. Transformations are needed for CE to be seen as a necessary scientific investment and part of the scientific process.