Work

A scientometric review of health data sharing for secondary use: Insights, frontiers and the path ahead

Year: 2025

Type: review

Abstract: BACKGROUND: As digital technologies advance, vast amounts of routinely collected health data are increasingly available for quality improvement and research. However, concerns persist around the reuse of personal health information. Understanding public attitudes and knowledge is essential to building social licence and enabling ethical, large-scale data use. OBJECTIVE: This study explores key research themes in sharing health data for secondary use since 2020, highlighting major topics, emerging research frontiers and future directions for practice. METHOD: An analysis of 95 publications from Web of Science, PubMed and Scopus was conducted using scientometric methods. Citation, co-citation and keyword co-occurrence analyses, along with strategic diagrams, were performed using VOSviewer to identify thematic clusters. RESULTS: Research has shifted from early exploratory studies to more multidisciplinary and technology-focused approaches. Key themes include digital tool adoption, integrated data systems and ethical data sharing solutions. The concept of consent has seen the most theoretical development, while public attitudes - particularly around ethical and sociocultural issues - remain underexplored but crucial. CONCLUSION: Ethical governance, transparency and community engagement are central to advancing health data sharing. Building public trust and securing a social licence are foundational to success, especially as challenges around consent, data linkage and public perception remain.Implications for health information management practice:This analysis provides insight into public willingness to share health data for secondary data use and offers guidance for fostering a strong social licence while building public trust. Strengthening these trust and engagement frameworks is vital to achieving ethical data use and maximising the potential health system benefits of secondary data use.

Source: Health Information Management Journal

DOI: 10.1177/18333583251393431