Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence.
Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence.
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DOI：
10.1136/medethics-2019-105651
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发表时间：
2022-01
影响因子：
4.1
通讯作者：
van Thiel G
中科院分区：
文献类型：
--
作者：
Kalkman S;van Delden J;Banerjee A;Tyl B;Mostert M;van Thiel G
卫生数据的国际共享为研究所谓的“大数据”打开了大门，这为改善以患者为中心的护理带来了巨大的希望。最近数据共享举措的失败表明，迫切需要投资于对研究人员和机构的社会信任。了解这种“社会许可”的关键是确定患者和公众对卫生研究数据共享可能持有的观点。我们对经验证据进行了叙述性审查，以解决患者和公众对将健康数据用于研究目的的看法和态度。于2019年4月检索文献数据库PubMed （MEDLINE）、Embase、Scopus和b谷歌Scholar以确定相关出版物。从选定的参考文献中提取患者和公众的态度，并按主题分类。纳入27篇论文，包括定性和定量研究以及系统评价。结果表明，尽管有条件，但在患者和公众中广泛支持卫生研究数据共享。尽管与会者认识到数据研究的实际或潜在好处，但他们对违反保密规定和可能滥用数据表示担忧。研究表明，在以下条件上达成了一致：价值、隐私、风险最小化、数据安全、透明度、控制、信息、信任、责任和问责制。我们的研究结果表明，不能简单地假定数据密集型健康研究的社会许可。为了加强社会许可，确定的条件应该在一个治理框架中运作，该框架将不同的患者和公众价值观、需求和利益纳入其中。
International sharing of health data opens the door to the study of the so-called ‘Big Data’, which holds great promise for improving patient-centred care. Failure of recent data sharing initiatives indicates an urgent need to invest in societal trust in researchers and institutions. Key to an informed understanding of such a ‘social license’ is identifying the views patients and the public may hold with regard to data sharing for health research. We performed a narrative review of the empirical evidence addressing patients’ and public views and attitudes towards the use of health data for research purposes. The literature databases PubMed (MEDLINE), Embase, Scopus and Google Scholar were searched in April 2019 to identify relevant publications. Patients’ and public attitudes were extracted from selected references and thematically categorised. Twenty-seven papers were included for review, including both qualitative and quantitative studies and systematic reviews. Results suggest widespread—though conditional—support among patients and the public for data sharing for health research. Despite the fact that participants recognise actual or potential benefits of data research, they expressed concerns about breaches of confidentiality and potential abuses of the data. Studies showed agreement on the following conditions: value, privacy, risk minimisation, data security, transparency, control, information, trust, responsibility and accountability. Our results indicate that a social license for data-intensive health research cannot simply be presumed. To strengthen the social license, identified conditions ought to be operationalised in a governance framework that incorporates the diverse patient and public values, needs and interests.
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影响因子：
2.7
作者：
Aitken M;de St Jorre J;Pagliari C;Jepson R;Cunningham-Burley S
通讯作者：
Cunningham-Burley S
影响因子：
2.7
作者：
Aitken M;Cunningham-Burley S;Pagliari C
通讯作者：
Pagliari C
影响因子：
5.2
作者：
Darquy, Sylviane;Moutel, Gregoire;Duchange, Nathalie
通讯作者：
Duchange, Nathalie
研究的社会许可证：为什么Care.Data遇到了麻烦。
影响因子：
4.1
作者：
Carter P;Laurie GT;Dixon-Woods M
通讯作者：
Dixon-Woods M
影响因子：
2.9
作者：
Colombo, Cinzia;Roberto, Anna;Banzi, Rita
通讯作者：
Banzi, Rita