Affiliation:
1. La Trobe University, Australia
2. Monash University, Australia
3. Florey Institute of Neuroscience and Mental Health, Australia
4. James Cook University, Australia
Abstract
Background: Health data sharing is important for monitoring diseases, policy and practice, and planning health services. If health data are used for secondary purposes, information needs to be provided to assist in reuse. Objectives: To review government health information asset websites to ascertain the extent of readily available, explanatory documentation for researcher sharing and reuse of these data. Method: Documentary analysis was undertaken on selected Victorian Government health information assets’ websites in Australia. Data were obtained on nine information-categories: data custodian; data context; data dictionary; quality controls; data quality; limitations; access process; privacy/confidentiality/security and research requests/outputs. Information-categories were compared by dataset type (administrative or population-health) and by curating organisation (government or other agency). Descriptive statistics were used. Results: The majority of the 25 websites examined provided information on data custodian (96%) and data context (92%). Two-thirds reported access process (68%) and privacy/confidentiality/security information (64%). Compared with population-health websites, administrative dataset websites were more likely to provide access to a data dictionary (67% vs 50%) and information on quality controls (56% vs 44%), but less likely to provide information on the access process (56% vs 75%) and on research requests/outputs (0% vs 56%, p = 0.024). Compared with government-curated websites, other agency websites were more likely to provide information on research requests/outputs (80% vs 7%, p < 0.001). Conclusion: There is inconsistent explanatory documentation available for researchers for reuse of Victorian Government health datasets. Importantly, there is insufficient information on data quality or dataset limitations. Research-curated dataset websites are significantly more transparent in displaying research requests or outputs.
Subject
Health Policy,Leadership and Management
Reference43 articles.
1. Addressing the challenges of cross-jurisdictional data linkage between a national clinical quality registry and government-held health data
2. Australian Government Department of Health and Aged Care (2022) Data strategy 2022–2025: Harnessing the power of data for better health, aged care and wellbeing. Available at: https://www.health.gov.au/resources/publications/department-of-health-and-aged-care-data-strategy-2022-25?language=en (accessed 19 April 2023).
3. The contextual nature of medical information
4. Document Analysis as a Qualitative Research Method
5. A Coefficient of Agreement for Nominal Scales