Unlocking insights: general practice staff perspectives on sharing general practice data for research – a scoping review
摘要
General practice data holds significant potential for secondary use in research, offering insights into healthcare delivery, disease patterns, and informing policy development. However, the ethical, practical, and relational complexities of data sharing in general practice settings remain underexplored. This scoping review investigates the perspectives of general practice staff—including general practitioners, practice nurses, and practice managers—on sharing general practice data for research purposes.
MethodsThe review followed the JBI methodology for scoping reviews and adhered to PRISMA-ScR guidelines. A comprehensive search of MEDLINE, Scopus, PsycINFO, and grey literature sources was conducted, with studies selected based on predefined inclusion criteria. Nine studies from Australia and the United Kingdom were included. Data were extracted and analysed using narrative synthesis to identify key themes and gaps in the literature.
ResultsGeneral practice staff broadly supported data sharing for research, citing public benefit and improved healthcare outcomes. However, support was conditional on robust privacy protections, ethical governance, and practical support. Key concerns included patient privacy, commercialisation, trust, consent models, and operational burden. Views on consent were polarised, with preferences varying between opt-in, opt-out, and waiver models. Notably, none of the included studies addressed the perspectives of vulnerable population groups, representing a significant gap in the literature.
ConclusionGeneral practice staff are willing to share data for research if ethical and practical safeguards are in place. Future initiatives must prioritise transparency, trust, and inclusivity—particularly by addressing the needs of vulnerable populations—to ensure equitable and sustainable data sharing practices.