Frequency and format of clinical trial results dissemination to patients: a survey of authors of trials indexed in PubMed
Frequency and format of clinical trial results dissemination to patients: a survey of authors of trials indexed in PubMed
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DOI：
10.1136/bmjopen-2019-032701
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发表时间：
2019-10-01
期刊：
影响因子：
2.9
通讯作者：
Clarke, Mike
中科院分区：
文献类型：
--
作者：
Schroter, Sara;Price, Amy;Clarke, Mike
客观传播研究成果对于研究诚信和促进新知识及其转化为实践和政策的潜力的讨论至关重要。我们调查了向试验参与者和患者群体传播的频率和形式。2014-2015 年 PubMed 索引的临床试验作者的设计调查。结果调查问卷通过电子邮件发送给 19 321 位作者；收到 3127 份回复（16%）。在这 3127 项试验中，2690 项有人类参与者，1818 项招募了个体患者。在 1818 名作者中，498 位作者 (27%) 报告已向参与者传播结果，238 位作者 (13%) 计划这样做，600 位作者 (33%) 没有计划，176 位作者 (10%) 不确定，306 位作者 (17%) 表示“其他”或没有回答。在已传播的 498 名作者中，198 名（40%）分享了学术报告，252 名（51%）分享了非专业报告，111 名（22%）分享了两者，164 名（33%）提供了个性化研究结果。在 1818 项试验中，577 名作者 (32%) 通过与慈善机构/患者团体直接联系在试验之外与患者分享/计划分享结果，401 名作者 (22%) 通过患者社区分享结果，845 名作者 (46%) 通过在有患者代表的会议上发言，494 名作者 (27%) 通过主流媒体，708 名作者 (39%) 通过在线总结。在 1818 名作者中，相对较少的作者报告说传播是由机构机构建议的：据报告，314 名资助者（17%）建议向试验参与者传播，252 名（14%）向患者群体建议传播；据报道，333 个（18%）伦理审查委员会建议向试验参与者传播，148 个（8%）向患者群体传播。作者描述了传播的许多障碍。结论 不到一半的受访者向参与者传播了（或计划这样做），并且只有一半的传播者分享了外行报告。向参与者传播结果的动机似乎是在研究团队内部产生的，而不是受到机构机构的激励。需要考虑多种因素并采取各种步骤来促进向参与者广泛传播研究成果。
Objective Dissemination of research findings is central to research integrity and promoting discussion of new knowledge and its potential for translation into practice and policy. We investigated the frequency and format of dissemination to trial participants and patient groups.Design Survey of authors of clinical trials indexed in PubMed in 2014-2015.Results Questionnaire emailed to 19 321 authors; 3127 responses received (16%). Of these 3127 trials, 2690 had human participants and 1818 enrolled individual patients. Among the 1818, 498 authors (27%) reported having disseminated results to participants, 238 (13%) planned to do so, 600 (33%) did not plan to, 176 (10%) were unsure and 306 (17%) indicated `other' or did not answer. Of the 498 authors who had disseminated, 198 (40%) shared academic reports, 252 (51%) shared lay reports, 111 (22%) shared both and 164 (33%) provided individualised study results. Of the 1818 trials, 577 authors (32%) shared/planned to share results with patients outside their trial by direct contact with charities/patient groups, 401 (22%) via patient communities, 845 (46%) via presentations at conferences with patient representation, 494 (27%) via mainstream media and 708 (39%) by online lay summaries. Relatively few of the 1818 authors reported dissemination was suggested by institutional bodies: 314 (17%) of funders reportedly suggested dissemination to trial participants, 252 (14%) to patient groups; 333 (18%) of ethical review boards reportedly suggested dissemination to trial participants, 148 (8%) to patient groups. Authors described many barriers to dissemination.Conclusion Fewer than half the respondents had disseminated to participants (or planned to) and only half of those who had disseminated shared lay reports. Motivation to disseminate results to participants appears to arise within research teams rather than being incentivised by institutional bodies. Multiple factors need to be considered and various steps taken to facilitate wide dissemination of research to participants.