The suitability of government health information assets for secondary use in research: A fit-for-purpose analysis

Abstract

Background Governments have responsibility for ensuring the quality and fitness-for-purpose of personal health data provided to them. While these health information assets are used widely for research, this secondary usage has received minimal research attention. Objective This study aimed to investigate the secondary uses, in research, of population health and administrative datasets (information assets) of the Department of Health (DoH), Victoria, Australia. The objectives were to (i) identify research based on these datasets published between 2008 and 2020; (ii) describe the data quality studies published between 2008 and 2020 for each dataset and (iii) evaluate “fitness-for-purpose” of the published research. Method Using a modified scoping review, research publications from 2008 to 2020 based on information assets related to health service provision and containing person-level data were reviewed. Publications were summarised by data quality and purpose-categories based on a taxonomy of data use. Fitness-for-purpose was evaluated by comparing the publicly stated purpose(s) for which each information asset was collected, with the purpose(s) assigned to the published research. Results Of the >1000 information assets, 28 were utilised in 756 publications: 54% were utilised for general research purposes, 14% for patient safety, 10% for quality of care and 39% included data quality-related publications. Almost 85% of publications used information assets that were fit-for-purpose. Conclusion The DoH information assets were used widely for secondary purposes, with the majority identified as fit-for-purpose. We recommend that data custodians, including governments, provide information on data quality and transparency on data use of their health information assets.

The knowledge and reuse practices of researchers utilising government health information assets, Victoria, Australia, 2008–2020

“…Riley et al’s. [ 55 ] documentary analysis of the availability of website information-categories involving the within-scope datasets identified that almost 70% of dataset websites contained information on the access process. Our survey demonstrated, however, that less than half of the respondents reported the process for requesting data access to be easy.…”

“…Our survey demonstrated, however, that less than half of the respondents reported the process for requesting data access to be easy. Given the documentary analysis findings [ 55 ], we would expect a higher proportion of survey respondents to find the access process easier if it was only related to documentation availability. In our survey we did not ask reasons why the process for requesting access was difficult; however, other researchers have reported ease of access can be related to factors such as data type (e.g., identifying versus aggregated), the access portal (e.g., openness), external factors (e.g., legal/legislative compliance issues), public engagement (e.g., acceptability of data release) [ 56 ], or resourcing issues (e.g., cost of infrastructure to sustain sharing and reuse of government data) [ 57 ].…”

“…Riley et al [ 32 ] identified 756 peer-review papers published between 2008–2020 which utilised selected Victorian Government Department of Health (The Department) information assets. These included 28 datasets containing person-level data related to health service provision.…”

The applications of Australian-coded ICD-10 and ICD-10-AM data in research: A scoping review of the literature

“…(1) What were the applications of ICD-10 and ICD-10-AM Australian-coded data in peer-reviewed research published in 2012-2022? (2) What were the purposes of ICD-10 and ICD-10-AM coded data within this research context, as classified according to a pre-existing, modified taxonomy of data use framework (Riley et al, 2022)?…”

Clinical documentation integrity: Its role in health data integrity, patient safety and quality outcomes and its impact on clinical coding and health information management

“…Conversely, creators of clinical documentation may have limited appreciation of the wide-ranging impact of CDI and its coded derivatives, including for purposes of research and epidemiology. The potential dangers of researchers using data inappropriately for secondary purposes was highlighted by Riley et al (2023b) who conducted a "fit for purpose" analysis of government health information assets. While the authors verified that the health information assets they examined had been appropriately used for secondary purposes, they nevertheless called for greater transparency in the secondary use of data, to safeguard public trust in the collection, storage and management of personal and sensitive information.…”