Health research participants' preferences for receiving research results
Health research participants' preferences for receiving research results
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DOI：
10.1177/1740774516665598
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发表时间：
2016-12-01
期刊：
影响因子：
2.7
通讯作者：
McElfish, Pearl A.
中科院分区：
文献类型：
--
作者：
Long, Christopher R.;Stewart, M. Kathryn;McElfish, Pearl A.
背景：健康研究的参与者通常表示有兴趣收到他们参与的研究的结果。然而，参与者的偏好和与接收结果相关的经验并没有得到很好的理解。一般来说，现有研究的样本量相对较小，通常涉及目标人群中的具体和往往敏感的问题。方法：本研究采用一项在线调查来探索ResearchMatch（一个包含过去、现在和潜在健康研究参与者的大型数据库）注册者的态度和经历。调查对象提供的信息涉及他们是否从他们参与的研究中获得研究结果，用于传达结果的方法，他们对结果的满意度，以及他们希望何时以及如何从未来的研究中获得研究结果。总共有70,699名ResearchMatch注册者被告知了这项研究的主题。在5207名要求提供完整研究信息的注册者中，3381名受访者完成了调查。结果：大约33%以前参加过健康研究的受访者报告收到了结果。大约一半以前参与过研究的受访者表示没有机会索取结果。然而，几乎所有的受访者都表示，研究人员应该总是或有时向参与者提供结果。受访者特别感兴趣的是与他们（或亲人）健康相关的结果，以及有关研究目的和基于结果的任何医学进展的信息。总的来说，受访者最喜欢的结果传播方式是电子邮件和网站发帖。最不理想的结果传播方法包括Twitter、电话会议和短信。在所有结果中，我们比较了有和没有研究参与经验的受访者的反应，以及在研究机构工作过的受访者和没有在研究机构工作过的受访者的反应。与有参与经验的受访者相比，没有参与经验的受访者比例更高，这表明结果应始终与参与者共享。同样，没有参与经验的受访者更重视收到调查中包含的每种结果信息。结论：我们从一项调查中得出结论，该调查评估了广泛样本的受访者的态度和经验，解决了与参与者对接收结果的偏好相关的知识差距。该研究的发现突出了受访者表达的通过特定方法获得特定类型结果的偏好与研究人员不愿意或无法提供这些结果之间的潜在不一致。我们提出了具体的建议，以改变新研究的方法，以调查参与者对接受研究结果的偏好。
Background: Participants in health research studies typically express interest in receiving the results from the studies in which they participate. However, participants' preferences and experiences related to receiving the results are not well understood. In general, the existing studies have had relatively small sample sizes and typically address specific and often sensitive issues within targeted populations.Methods: This study used an online survey to explore attitudes and experiences of registrants in ResearchMatch, a large database of past, present, and potential health research participants. Survey respondents provided information related to whether or not they received research results from studies in which they participated, the methods used to communicate the results, their satisfaction with the results, and when and how they would like to receive research results from future studies. In all, 70,699 ResearchMatch registrants were notified of the study's topic. Of the 5207 registrants who requested full information about the study, 3381 respondents completed the survey.Results: Approximately 33% of respondents with previous health research participation reported receiving the results. Approximately half of respondents with previous research participation reported no opportunity to request the results. However, almost all respondents said researchers should always or sometimes offer the results to participants. Respondents expressed particular interest in the results related to their (or a loved one's) health, as well as information about studies' purposes and any medical advances based on the results. In general, respondents' most preferred dissemination methods for the results were email and website postings. The least desirable dissemination methods for the results included Twitter, conference calls, and text messages. Across all the results, we compare the responses of respondents with and without previous research participation experience and those who have worked in research organizations versus those who have not. Compared to respondents who have previous participation experience, a greater proportion of respondents with no participation experience indicated that the results should always be shared with participants. Likewise, respondents with no participation experience placed higher importance on the receipt of each type of results' information included in the survey.Conclusion: We present findings from a survey assessing attitudes and experiences of a broad sample of respondents that addresses gaps in knowledge related to participants' preferences for receiving the results. The study's findings highlight the potential for inconsistency between respondents' expressed preferences to receive specific types of results via specific methods and researchers' unwillingness or inability to provide them. We present specific recommendations to shift the approach of new studies to investigate participants' preferences for receiving research results.