Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies.
Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies.
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DOI：
10.1186/s12910-016-0153-x
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发表时间：
2016-11-10
影响因子：
2.7
通讯作者：
Cunningham-Burley S
中科院分区：
文献类型：
--
作者：
Aitken M;de St Jorre J;Pagliari C;Jepson R;Cunningham-Burley S
过去10年来，为二次利用而分享卫生数据的情况显著增加。与此同时，公众对数据共享和数据链接做法的可接受性越来越感兴趣。公众接受被认为是确保现行做法和治理制度合法性的关键。鉴于国际社会对这一领域的兴趣日益增加，这一系统审查和专题综合是对现有证据的及时审查。它突出了影响公众反应的关键因素以及需要进一步研究的重要领域。本文报告了一个系统的审查和专题综合的定性研究，探讨公众的态度，以共享或链接的健康数据的研究目的。25项研究被纳入审查。纳入的研究主要在英国和北美进行，一项研究在日本进行，另一项在瑞典进行，另一项在多个国家进行。纳入的研究在1999年至2013年期间进行（入选的8项研究未报告数据收集日期）。研究中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。在研究的语料库中确定的关键主题涉及公众支持/接受的必要条件，公众关注的领域和对未来研究的影响。研究结果表明，越来越多的证据表明，为研究目的而进行的数据链接和数据共享得到了广泛的一般性支持，尽管是有条件的。虽然在参与者认为研究可为公众带来实际或潜在利益，并信任进行及/或监督数据连接/共用的个人或机构的情况下，会提出各种关注（例如有关保密、个人对其数据的控制、数据的使用及滥用，以及可能产生的危害），但他们普遍支持。研究还发现，目前对现有做法和数据使用的认识水平很低。虽然结果表明，广泛的（有条件的）公众支持数据共享和链接的研究目的，存在一系列的关注。为了确保公众支持今后的研究工作，需要进一步提高认识，同时提供机会让公众参与和审议。这对于确保未来卫生信息学研究的合法性和避免进一步的公众争议至关重要。
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. 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. 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. 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.
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影响因子：
2.4
作者：
Britten, Nicky;Campbell, Rona;Pill, Roisin
通讯作者：
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影响因子：
7.7
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影响因子：
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作者：
Aitken M;Cunningham-Burley S;Pagliari C
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DOI：
10.1111/j.1475-6781.2005.00070.x
发表时间：
2005-11-01
影响因子：
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作者：
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DOI：
10.1016/j.ijmedinf.2012.01.005
发表时间：
2012-04-01
影响因子：
4.9
作者：
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通讯作者：
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