TY - JOUR
T1 - The suitability of government health information assets for secondary use in research
T2 - A fit-for-purpose analysis
AU - Riley, Merilyn
AU - Robinson, Kerin
AU - Kilkenny, Monique F.
AU - Leggat, Sandra G.
N1 - Publisher Copyright:
© The Author(s) 2022.
PY - 2023/9
Y1 - 2023/9
N2 - 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.
AB - 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.
KW - data quality
KW - data sharing
KW - disease registry
KW - health administrative data
KW - health data
KW - health datasets
KW - health information
KW - health information management
KW - health information systems
KW - health registry
KW - registries
KW - secondary use of health data
UR - http://www.scopus.com/inward/record.url?scp=85129899314&partnerID=8YFLogxK
U2 - 10.1177/18333583221078377
DO - 10.1177/18333583221078377
M3 - Article
C2 - 35471919
AN - SCOPUS:85129899314
SN - 1833-3583
VL - 52
SP - 157
EP - 166
JO - Health Information Management Journal
JF - Health Information Management Journal
IS - 3
ER -