将个人研究成果返还给参与者:价值观、偏好和期望

IF 2.1 Q3 MEDICINE, RESEARCH & EXPERIMENTAL Journal of Clinical and Translational Science Pub Date : 2024-09-18 DOI:10.1017/cts.2024.568
Denise A. Kent, Michelle Villegas-Downs, Marina Del Rios, Michael Freedman, Jerry A. Krishnan, Martha G. Menchaca, Crystal L. Patil, Jenny Sculley, Nathan Tintle, Lynn B. Gerald
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引用次数: 0

摘要

背景/目的:向参与者披露个人研究结果并非标准做法。将个人研究结果返还给参与者可能会提高研究的招募、保留和参与度。本研究旨在探讨研究参与者在接收个人研究结果时的偏好、期望和体验。研究方法采用混合方法,包括半结构式访谈和健康素养评估,对参加一项队列研究的参与者进行访谈。通过对访谈进行分析,了解参与者目前的经历。通过描述性分析,对参与者的回答进行比较,以确定参与者之间的一致性和差异性。结果43 名英语参与者和 16 名西班牙语参与者参加了访谈。98% 的参与者希望收到自己的个人研究成果。75%的参与者称他们与医疗保健提供者分享了研究结果。与 65 岁的参与者(20%)相比,更多 18-65 岁的参与者表示需要与医疗服务提供者进行后续沟通(70%)。三分之二的参与者表示在收到研究结果后有积极的体验,但也有 22% 表示焦虑和担心。大多数参与者(69%)称电子病历(EMR)是他们接收结果的首选方法。然而,只有 50% 讲西班牙语的人喜欢通过 EMR 接收研究结果,而讲英语的人则有 77%。健康知识水平较低的参与者更愿意亲自或通过电话接收研究结果。结论研究参与者重视接收个人的研究结果,这可能会增加研究机构的招募和留用。虽然还需要进行更多的研究,但从本研究中吸取的经验教训为制定有关个人研究成果返还的最佳实践和政策奠定了基础。
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Returning individual research results to participants: Values, preferences, and expectations
Background/objective: Disclosing individual research results to participants is not standard practice. The return of individual research results to participants may increase recruitment, retention, and engagement in research. This study’s objective was to explore the preferences, expectations, and experiences of research participants receiving individual research results. Methods: A mixed-methods approach, consisting of semi-structured interviews and a health literacy assessment, was used with participants enrolled in a cohort study. The interviews were analyzed to produce an understanding of current experiences. Using descriptive analyses, responses were compared to identify alignments and divergences among participants. Results: Forty-three English-speaking and 16 Spanish-speaking participants enrolled. Ninety-eight percent of participants wanted to receive their individual research results. Seventy-five percent of participants reported they shared results with their healthcare providers. More participants aged 18–65 reported the need to follow up with their provider (70%) as compared to participants > 65 (20%). Two-thirds of participants reported a positive experience receiving their research results; however, 22% reported anxiety and worry. Most participants (69%) described the electronic medical record (EMR) as their preferred method for receiving their results. Yet only 50% of Spanish speakers preferred receiving research results through the EMR compared to 77% of English speakers. Participants with low health literacy preferred receiving study results in person or by phone. Conclusion: Research participants value receiving their individual research results, and this may increase recruitment and retention within the research enterprise. While more research is needed, the lessons learned from this study lay the groundwork for developing best practices and policies around the return of individual research results.
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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
期刊最新文献
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