Northern Clinical School, Faculty of Medicine, University of Sydney, Sydney, Australia.
Department of Psychology, The University of Sydney, Sydney, NSW, Australia.
Syst Rev. 2020 Oct 12;9(1):240. doi: 10.1186/s13643-020-01485-5.
A systematic literature review of researchers and healthcare professionals' attitudes towards the secondary use and sharing of health administrative and clinical trial data was conducted using electronic data searching. Eligible articles included those reporting qualitative or quantitative original research and published in English. No restrictions were placed on publication dates, study design, or disease setting. Two authors were involved in all stages of the review process; conflicts were resolved by consensus. Data was extracted independently using a pre-piloted data extraction template. Quality and bias were assessed using the QualSyst criteria for qualitative studies. Eighteen eligible articles were identified, and articles were categorised into four key themes: barriers, facilitators, access, and ownership; 14 subthemes were identified. While respondents were generally supportive of data sharing, concerns were expressed about access to data, data storage infrastructure, and consent. Perceptions of data ownership and acknowledgement, trust, and policy frameworks influenced sharing practice, as did age, discipline, professional focus, and world region. Young researchers were less willing to share data; they were willing to share in circumstances where they were acknowledged. While there is a general consensus that increased data sharing in health is beneficial to the wider scientific community, substantial barriers remain. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018110559.
对研究人员和医疗保健专业人员对健康管理和临床试验数据的二次使用和共享态度进行了系统的文献回顾,使用电子数据搜索进行。合格的文章包括报告定性或定量原始研究并以英文发表的文章。对发表日期、研究设计或疾病设置没有任何限制。两位作者参与了审查过程的所有阶段;通过协商解决了冲突。使用预先制定的数据提取模板独立提取数据。使用 QualSyst 标准评估定性研究的质量和偏差。确定了 18 篇合格的文章,并将文章分为四个关键主题:障碍、促进因素、访问和所有权;确定了 14 个副标题。尽管受访者普遍支持数据共享,但他们对数据访问、数据存储基础设施和同意表示担忧。对数据所有权和认可、信任和政策框架的看法影响了共享实践,年龄、学科、专业重点和世界区域也是如此。年轻的研究人员不太愿意分享数据;他们愿意在被认可的情况下分享数据。尽管人们普遍认为增加健康数据共享对更广泛的科学界有益,但仍存在重大障碍。系统评价登记:PROSPERO CRD42018110559。