Using a knowledge exchange event to assess study participants' attitudes to research in a rapidly evolving research context.
Using a knowledge exchange event to assess study participants' attitudes to research in a rapidly evolving research context.
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DOI：
10.12688/wellcomeopenres.15651.1
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发表时间：
2020-01-01
影响因子：
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通讯作者：
McIntosh, Andrew M
中科院分区：
文献类型：
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作者：
Beange, Iona;Kirkham, Elizabeth J;McIntosh, Andrew M
背景：英国主办了一些世界上持续时间最长的纵向队列研究，这些研究对参与者进行反复观察，并利用这些数据来探索健康结果。数据收集的另一种方法是记录链接；电子健康和行政记录的连接。在全国范围内应用，这可以提供无与伦比的机会来永久跟踪大量的人。然而，公众对在研究中使用数据的态度目前尚不清楚。在这里，我们报告了一个事件，我们收集了对健康数据科学中最近的机会和争议的态度。方法：约有250人（队列成员和他们的客人）参加了该活动，他们是通过参与队列研究的办公室邀请的。会上有一系列介绍主要研究成果的演讲，观众使用交互式投票板参与了15个选择题。结果：我们的参与者对研究人员（87%）和医生（81%）表现出高度的信任（评分为4/5或5/5）；但对商业公司的信任度更低（35%）。他们支持研究人员使用新生儿血斑（格思里斑）（97%同意）和电子健康记录（95%同意）的信息的想法。我们的受访者愿意佩戴像“Fit-bit”这样的设备（78%同意），或者接受可能预测未来精神疾病的脑部扫描（73%）。然而，他们不太愿意为了研究目的而服用新药（45%）。他们热衷于鼓励其他人参与研究；无论是为孕妇提供机会（97%同意），还是向自己的子女和孙辈发出邀请（98%）。结论：我们的参与者广泛支持研究获取数据，尽管在涉及商业利益时不太支持。促进双向互动的公众参与活动可以影响和支持未来的研究和公众参与工作。
Background: The UK hosts some of the world's longest-running longitudinal cohort studies, who make repeated observations of their participants and use these data to explore health outcomes. An alternative method for data collection is record linkage; the linking together of electronic health and administrative records. Applied nationally, this could provide unrivalled opportunities to follow a large number of people in perpetuity. However, public attitudes to the use of data in research are currently unclear. Here we report on an event where we collected attitudes towards recent opportunities and controversies within health data science. Methods: The event was attended by ~250 individuals (cohort members and their guests), who had been invited through the offices of their participating cohort studies. There were a series of presentations describing key research results and the audience participated in 15 multiple-choice questions using interactive voting pads. Results: Our participants showed a high level of trust in researchers (87% scoring them 4/5 or 5/5) and doctors (81%); but less trust in commercial companies (35%). They supported the idea of researchers using information from both neonatal blood spots (Guthrie spots) (97% yes) and from electronic health records (95% yes). Our respondents were willing to wear devices like a 'Fit-bit' (78% agreed) or take a brain scan that might predict later mental illness (73%). However, they were less willing to take a new drug for research purposes (45%). They were keen to encourage others to take part in research; whether that be offering the opportunity to pregnant mothers (97% agreed) or extending invitations to their own children and grandchildren (98%). Conclusions: Our participants were broadly supportive of research access to data, albeit less supportive when commercial interests were involved. Public engagement events that facilitate two-way interactions can influence and support future research and public engagement efforts.