Riley Merilyn, Kilkenny Monique F, Robinson Kerin, Leggat Sandra G
La Trobe University, Australia.
Monash University, Australia.
Health Inf Manag. 2025 Jan;54(1):84-92. doi: 10.1177/18333583231197756. Epub 2023 Oct 10.
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.
To review government health information asset websites to ascertain the extent of readily available, explanatory documentation for researcher sharing and reuse of these data.
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.
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%, = 0.024). Compared with government-curated websites, other agency websites were more likely to provide information on research requests/outputs (80% vs 7%, < 0.001).
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.
健康数据共享对于疾病监测、政策与实践以及健康服务规划至关重要。若健康数据用于二次目的,则需要提供信息以助力其再利用。
审查政府健康信息资产网站,以确定可供研究人员共享和再利用这些数据的现成解释性文档的程度。
对澳大利亚维多利亚州政府选定的健康信息资产网站进行文献分析。获取了九个信息类别的数据:数据保管人;数据背景;数据字典;质量控制;数据质量;局限性;访问流程;隐私/保密/安全以及研究请求/产出。信息类别按数据集类型(行政或人群健康)以及整理机构(政府或其他机构)进行比较。使用描述性统计方法。
所审查的25个网站中,大多数提供了关于数据保管人(96%)和数据背景(92%)的信息。三分之二的网站报告了访问流程(68%)和隐私/保密/安全信息(64%)。与人群健康网站相比,行政数据集网站更有可能提供数据字典访问权限(67%对50%)和质量控制信息(56%对44%),但提供访问流程信息(56%对75%)和研究请求/产出信息(0%对56%,P = 0.024)的可能性较小。与政府整理的网站相比,其他机构网站更有可能提供研究请求/产出信息(80%对7%,P < 0.001)。
对于研究人员再利用维多利亚州政府健康数据集,可用的解释性文档不一致。重要的是,关于数据质量或数据集局限性的信息不足。研究整理的数据集网站在显示研究请求或产出方面明显更透明。