系统综述参与者对数据共享的态度:主题综合分析。
Systematic review of participants' attitudes towards data sharing: a thematic synthesis.
机构信息
1 Database Manager, Newcastle Clinical Trials Unit, 5994 Newcastle University , Newcastle University, UK.
2 Senior Research Lecturer in Public Health, School of Health and Social Care, Teesside University, UK.
出版信息
J Health Serv Res Policy. 2018 Apr;23(2):123-133. doi: 10.1177/1355819617751555.
Objectives Data sharing is well established in biological research, but evidence on sharing of clinical trial or public health research study data remains limited, in particular studies of research participants' perspectives of data sharing. This study systematically reviewed international evidence of research participants' attitudes towards the sharing of data for secondary research use. Methods Systematic search of seven databases, and author-, citation- and bibliography-follow up to identify studies examining research participants' attitudes towards data sharing. Studies were thematically analysed using NVivo v10 to identify recurring themes. Results Nine studies were eligible for inclusion. Thematic analysis identified four key themes: (1) benefits of data sharing, including benefit to participants or immediate community, benefits to the public and benefits to science or research; (2) fears and harms, such as fear of exploitation, stigmatization or repercussions, alongside concerns about confidentiality and misuse of data; (3) data sharing processes, in particular the role of consent in the process; and (4) the relationship between participants and research such as trust in different types of research or organization and the relationship with the original research team. Conclusions The available literature on attitudes towards sharing data from clinical trials or public health interventions remains scant. This study has identified four themes regarding research participants' attitudes and preferences, which should be considered by policy makers, and explored with further research.
目的
数据共享在生物研究中已经得到很好的建立,但关于临床试验或公共卫生研究数据共享的证据仍然有限,特别是关于研究参与者对数据共享观点的研究。本研究系统地回顾了国际上关于研究参与者对二次研究使用数据共享态度的证据。
方法
系统地搜索了七个数据库,并通过作者、引文和参考文献追踪,以确定研究参与者对数据共享态度的研究。使用 NVivo v10 对研究进行主题分析,以确定反复出现的主题。
结果
有 9 项研究符合纳入标准。主题分析确定了四个关键主题:(1)数据共享的好处,包括对参与者或直接社区、公众和科学或研究的好处;(2)担忧和危害,如对剥削、污名化或后果的恐惧,以及对数据保密性和滥用的担忧;(3)数据共享过程,特别是同意在该过程中的作用;(4)参与者与研究之间的关系,例如对不同类型的研究或组织的信任,以及与原始研究团队的关系。
结论
关于临床试验或公共卫生干预数据共享态度的现有文献仍然很少。本研究确定了关于研究参与者态度和偏好的四个主题,这些主题应引起政策制定者的关注,并通过进一步研究加以探讨。