文章基本信息

标题：Guidance for researchers wanting to link NHS data using non-consent approaches: a thematic analysis of feedback from the Health Research Authority Confidentiality Advisory Group
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作者：Lauren Cross ; Lauren Emma Carson ; Amelia Jewell 等
期刊名称：International Journal of Population Data Science
电子版ISSN：2399-4908
出版年度：2020
卷号：5
期号：1
页码：1-8
DOI：10.23889/ijpds.v5i1.1355
出版社：Swansea University
摘要：IntroductionThe use of linked data and non-consent methodologies is a rapidly growing area of health research due to the increasing detail, availability and scope of routinely collected electronic health records data. However, gaining the necessary legal and governance approvals to undertake data linkage is a complex process in England. ObjectivesWe reflect on our own experience of establishing lawful basis for data linkage through Section 251 approval, with the intention to build a knowledgebase of practical advice for future applicants. MethodsThematic analysis was conducted on a corpus of Section 251 feedback reports from the NHS Health Research Authority Confidentiality Advisory Group. ResultsFour themes emerged from the feedback. These were: (a) Patient and Public Involvement, (b)~Establishing Rationale, (c) Data maintenance and contingency, and the need to gain (d) Further Permissions from external authorities prior to full approval. ConclusionsSecuring Section 251 approval poses ethical, practical and governance challenges. However, through a comprehensive, planned approach Section 251 approval is possible, enabling researchers to unlock the potential of linked data for the purposes of health research.
关键词：Data Linkage; Section 251; Thematic Analysis; Non-Consent Approaches