Aitken Mhairi, de St Jorre Jenna, Pagliari Claudia, Jepson Ruth, Cunningham-Burley Sarah
Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Medical School, Teviot Place, Edinburgh, EH8 9AG, UK.
The Scottish Collaboration for Public Health Research (SCPHRP), 20 West Richmond Street, Edinburgh, EH8 9DX, UK.
BMC Med Ethics. 2016 Nov 10;17(1):73. doi: 10.1186/s12910-016-0153-x.
BACKGROUND: The past 10 years have witnessed a significant growth in sharing of health data for secondary uses. Alongside this there has been growing interest in the public acceptability of data sharing and data linkage practices. Public acceptance is recognised as crucial for ensuring the legitimacy of current practices and systems of governance. Given the growing international interest in this area this systematic review and thematic synthesis represents a timely review of current evidence. It highlights the key factors influencing public responses as well as important areas for further research. METHODS: This paper reports a systematic review and thematic synthesis of qualitative studies examining public attitudes towards the sharing or linkage of health data for research purposes. Twenty-five studies were included in the review. The included studies were conducted primarily in the UK and North America, with one study set in Japan, another in Sweden and one in multiple countries. The included studies were conducted between 1999 and 2013 (eight studies selected for inclusion did not report data collection dates). The qualitative methods represented in the studies included focus groups, interviews, deliberative events, dialogue workshops and asynchronous online interviews. RESULTS: Key themes identified across the corpus of studies related to the conditions necessary for public support/acceptability, areas of public concern and implications for future research. The results identify a growing body of evidence pointing towards widespread general-though conditional-support for data linkage and data sharing for research purposes. Whilst a variety of concerns were raised (e.g. relating to confidentiality, individuals' control over their data, uses and abuses of data and potential harms arising) in cases where participants perceived there to be actual or potential public benefits from research and had trust in the individuals or organisations conducting and/or overseeing data linkage/sharing, they were generally supportive. The studies also find current low levels of awareness about existing practices and uses of data. CONCLUSIONS: Whilst the results indicate widespread (conditional) public support for data sharing and linkage for research purposes, a range of concerns exist. In order to ensure public support for future research uses of data greater awareness raising combined with opportunities for public engagement and deliberation are needed. This will be essential for ensuring the legitimacy of future health informatics research and avoiding further public controversy.
背景:在过去十年中,用于二次利用的健康数据共享有了显著增长。与此同时,人们对数据共享和数据链接实践的公众可接受性的兴趣也与日俱增。公众接受度被认为对于确保当前实践和治理体系的合法性至关重要。鉴于国际上对这一领域的兴趣日益浓厚,本系统综述和主题综合分析及时回顾了当前的证据。它突出了影响公众反应的关键因素以及进一步研究的重要领域。 方法:本文报告了一项对定性研究的系统综述和主题综合分析,这些研究考察了公众对出于研究目的共享或链接健康数据的态度。该综述纳入了25项研究。纳入的研究主要在英国和北美进行,一项研究在日本开展,另一项在瑞典,还有一项在多个国家进行。纳入的研究在1999年至2013年期间开展(八项入选研究未报告数据收集日期)。研究中所采用的定性方法包括焦点小组、访谈、审议活动、对话研讨会和异步在线访谈。 结果:在整个研究语料库中确定的关键主题涉及公众支持/接受所需的条件、公众关注的领域以及对未来研究的影响。结果表明,越来越多的证据表明,对于出于研究目的的数据链接和数据共享,公众普遍(尽管有条件)给予支持。虽然提出了各种担忧(例如与保密性、个人对其数据的控制、数据的使用和滥用以及可能产生的潜在危害有关),但在参与者认为研究有实际或潜在的公共利益,并且对进行和/或监督数据链接/共享的个人或组织有信任的情况下,他们通常是支持的。研究还发现,目前公众对现有数据实践和用途的认识水平较低。 结论:虽然结果表明公众普遍(有条件)支持出于研究目的的数据共享和链接,但仍存在一系列担忧。为了确保公众对未来数据研究用途的支持,需要提高公众意识,并为公众参与和审议提供机会。这对于确保未来健康信息学研究的合法性以及避免进一步的公众争议至关重要。
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