Stakeholder engagement in eight comparative effectiveness trials in African Americans and Latinos with asthma.
Stakeholder engagement in eight comparative effectiveness trials in African Americans and Latinos with asthma.
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DOI：
10.1186/s40900-022-00399-x
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发表时间：
2022-11-24
影响因子：
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通讯作者：
Sumino, Kaharu
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作者：
Dy, Tiffany;Hamilton, Winifred J;Kramer, C Bradley;Apter, Andrea;Krishnan, Jerry A;Stout, James W;Teach, Stephen J;Federman, Alex;Elder, John;Bryant-Stephens, Tyra;Bruhl, Rebecca J;Jackson, Shawni;Sumino, Kaharu
利益相关者参与的影响，特别是在比较有效性试验中，尚未得到广泛报道。2014年，八项针对非裔美国人和西班牙裔/拉丁裔哮喘患者的比较有效性研究由以患者为中心的结局研究所（PCRI）资助，作为其解决差异计划的一部分。获奖者必须有意义地参与患者和其他利益相关者。使用具体的例子，我们描述了这些利益相关者如何大大改变了研究方案，并以其他方式有意义地参与了八项研究的开发和进行的全面合作伙伴。 使用案例的方法内容分析，我们确定了有关利益相关者类型，参与方法，利益相关者的输入，研究协议和流程的变化，以及参与过程中的感知利益和挑战的主题。我们使用八个团队会议的摘要、参与调查的结果和最终研究报告作为我们的数据源，以获得详细信息。描述性数据由多位评审员使用归纳和演绎定性方法进行评估，并在参与文献的背景下进行讨论。 利益相关者参与了所有8项哮喘研究的计划、实施和传播阶段。所有研究都包括临床医生和社区代表作为利益相关者。其他利益攸关方包括哮喘患者、他们的照顾者、倡导组织和卫生系统代表。参与主要是通过参与咨询委员会，尽管八项研究中有六项（75%）也利用了焦点小组和一对一访谈。很难找到时间和地点见面是参与的最大挑战，八个团队中有四个（50%）指出。报告的其他参与挑战和障碍包括：利益攸关方的招聘、利益攸关方之间热情的高低不一、控制权力动态、确保利益攸关方的参与得到反映并对项目产生真正的影响。参与驱动的修改导致了研究设计和实施的具体变化，这些变化被认为增加了目标社区的入组率和总体信任和支持水平。我们相信，每项研究中的研究者与利益相关者之间以及研究者与利益相关者群体之间所描述的互动水平是前所未有的，并且可以为寻求提高社区驱动研究有效性的其他研究提供有用的指导。在线版本包含补充材料，可通过10.1186/s40900-022-00399-x获得。比较临床有效性研究的目标是比较医疗保健方案，并根据患者的偏好和情况了解哪些方案最适合患者。当研究人员与利益相关者，如患者，医疗保健提供者和社区的其他成员，特别是那些计划研究的目标社区或群体合作时，研究工作会更有效。利益相关者可以在整个研究过程中提供意见，以确保研究将解决对参与者最重要和最有用的问题和关注。2014年，PCRI资助了8项研究，评估了帮助非洲裔美国人和西班牙裔/拉丁裔哮喘控制不良的各种方法。这些群体在哮喘研究中的代表性不足，但由于知之甚少的原因，他们的哮喘发病率更高，病情更严重。本报告的目的是展示患者-包括来自这些代表性不足的群体的哮喘患者，照顾哮喘患者的医疗保健提供者，来自社区的主要代表和其他人-如何作为全面合作伙伴参与八项研究，并帮助提高研究的整体质量以及研究人员与社区之间的关系。在线版本包含补充材料，可通过10.1186/s40900-022-00399-x获得。
The effects of stakeholder engagement, particularly in comparative effectiveness trials, have not been widely reported. In 2014, eight comparative effectiveness studies targeting African Americans and Hispanics/Latinos with uncontrolled asthma were funded by the Patient-Centered Outcomes Research Institute (PCORI) as part of its Addressing Disparities Program. Awardees were required to meaningfully involve patients and other stakeholders. Using specific examples, we describe how these stakeholders substantially changed the research protocols and in other ways participated meaningfully as full partners in the development and conduct of the eight studies. Using the method content analysis of cases, we identified themes regarding the types of stakeholders, methods of engagement, input from the stakeholders, changes made to the research protocols and processes, and perceived benefits and challenges of the engagement process. We used summaries from meetings of the eight teams, results from an engagement survey, and the final research reports as our data source to obtain detailed information. The descriptive data were assessed by multiple reviewers using inductive and deductive qualitative methods and discussed in the context of engagement literature. Stakeholders participated in the planning, conduct, and dissemination phases of all eight asthma studies. All the studies included clinicians and community representatives as stakeholders. Other stakeholders included patients with asthma, their caregivers, advocacy organizations, and health-system representatives. Engagement was primarily by participation in advisory boards, although six of the eight studies (75%) also utilized focus groups and one-on-one interviews. Difficulty finding a time and location to meet was the most reported challenge to engagement, noted by four of the eight teams (50%). Other reported challenges and barriers to engagement included recruitment of stakeholders, varying levels of enthusiasm among stakeholders, controlling power dynamics, and ensuring that stakeholder involvement was reflected and had true influence on the project. Engagement-driven modifications led to specific changes in study design and conduct that were felt to have increased enrollment and the general level of trust and support of the targeted communities. The level of interaction described, between investigators and stakeholders in each study and between investigator-stakeholder groups, is—we believe—unprecedented and may provide useful guidance for other studies seeking to improve the effectiveness of community-driven research. The online version contains supplementary material available at 10.1186/s40900-022-00399-x. The goal of comparative clinical effectiveness research is to compare healthcare options and learn which work best for patients depending on their preferences and circumstances. Research efforts can be more effective when researchers engage stakeholders, such as patients, healthcare providers, and other members of the community—especially those communities or groups targeted by the planned research. Stakeholders can give their input throughout the research process to make sure the study will address questions and concerns that are most important and useful for participants. In 2014, the PCORI funded eight research studies that evaluated various ways to help African Americans and Hispanics/Latinos with poorly controlled asthma. These groups are underrepresented in asthma research but have higher rates of and more severe asthma for reasons that are poorly understood. The goal of this report is to show how stakeholders—including patients with asthma from these underrepresented groups, healthcare providers who care for patients with asthma, key representatives from the communities and others—participated as full partners in the eight studies and helped to improve the overall quality of the research and the relationship between the researchers and the community. The online version contains supplementary material available at 10.1186/s40900-022-00399-x.