JMIR Publications

ABSTRACT

Background:

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

Objective:

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

Methods:

The study followed the methodological framework of Arksey and O’Malley and PRISMA extension for scoping reviews. Online databases namely PubMed, Cochrane, Ovid, ACM, IEEE Xplore, and Google Scholar were searched by two independent reviewers 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 articles. A third reviewer made the final decision for unresolved discrepancies between the first two reviewers. The framework by the WHO Pan American Health Organization, a high-level framework for planning and implementing data governance in public health, was utilized in the data extraction and analysis. Descriptive statistics were employed, and a descriptive approach was used to summarize the results of the scoping review.

Results:

A total of 9,847 titles were identified and 57 articles 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/patient (including family/relatives), and relevant organizations are involved in older persons data governance. Data governance frameworks are designed and implemented by reviewing the current evidence, involving the stakeholders from planning to implementation and defining their roles, obligations, accountabilities, and the system, implementing specific processes, and testing and monitoring. Processes such as collection of older persons’ health data, aggregating these data to inform the assessment, diagnosis, and care management, and implementing such processes to address certain health issues, as well as the use of innovative approaches contribute to the improvement of older persons’ health.

Conclusions:

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. Clinical Trial: Not applicable