Exploring Literature on Data Governance in the Health Care of Older Persons: Scoping Review

Health data are growing rapidly, and the processing of such data is evolving. Research on data governance in older persons' health care is unexplored, providing little guidance for practice and future studies.

This scoping review aimed to synthesize available information on data governance in the context of older persons' health based on evidence from literature.

The study followed the methodological framework of Arksey and O'Malley and PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews). Online databases, namely, PubMed, Cochrane, Ovid, ACM, IEEE Xplore, and Google Scholar were searched by 2 independent reviewers (AG and AMB) for studies on older persons' health data governance published from January 2000 to April 2024. The independent reviewers performed the search, screening, data extraction, and review of full-text papers. A third reviewer (YP) made the final decision for unresolved discrepancies between the first 2 reviewers. The framework by the World Health Organization Pan American Health Organization, a high-level framework for planning and implementing data governance in public health, was used in the data extraction and analysis. Descriptive statistics were used, and a descriptive approach was used to summarize the results of the scoping review.

A total of 9840 titles were identified and 57 papers were included. Of these, 35 (61.4%) focused on technology, 19 (33.3%) on processes, and 3 (5.3%) on people. Data controller, processor, researchers, data subject or patient (including family or relatives), and relevant organizations were involved in older persons' data governance. Data governance frameworks were designed and implemented by reviewing the current evidence, involving the stakeholders throughout the process, implementing specific procedures (eg, collection and aggregating health data), and monitoring and evaluating them.

The review underscores the importance of the involvement of relevant stakeholders and the use of various innovative tools and approaches in governing data related to the health of older persons. Meanwhile, research specifically addressing data governance for older persons' health conditions is limited. To enhance health outcomes for older persons, effective data governance is essential, alongside further research on relevant policies and practices.