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.

Keywords

data quality data sharing health information systems registries health information management health registry disease registry secondary use of health data health data health information health datasets health administrative data

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