TY - JOUR
T1 - The knowledge and reuse practices of researchers utilising government health information assets, Victoria, Australia, 2008- 2020
AU - Riley, Merilyn
AU - Robinson, Kerin
AU - Kilkenny, Monique F.
AU - Leggat, Sandra G.
N1 - Publisher Copyright:
© 2024 Riley et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
PY - 2024/2
Y1 - 2024/2
N2 - Background Using government health datasets for secondary purposes is widespread; however, little is known on researchers' knowledge and reuse practices within Australia. Objectives To explore researchers' knowledge and experience of governance processes, and their data reuse practices, when using Victorian government health datasets for research between 2008-2020. Method A cross-sectional quantitative survey was conducted with authors who utilised selected Victorian, Australia, government health datasets for peer-reviewed research published between 2008-2020. Information was collected on researchers': data reuse practices; knowledge of government health information assets; perceptions of data trustworthiness for reuse; and demographic characteristics. Results When researchers used government health datasets, 45% linked their data, 45% found the data access process easy and 27% found it difficult. Government-curated datasets were significantly more difficult to access compared to other-agency curated datasets (p = 0.009). Many respondents received their data in less than six months (58%), in aggregated or deidentified form (76%). Most reported performing their own data validation checks (70%). To assist in data reuse, almost 71% of researchers utilised (or created) contextual documentation, 69% a data dictionary, and 62% limitations documentation. Almost 20% of respondents were not aware if data quality information existed for the dataset they had accessed. Researchers reported data was managed by custodians with rigorous confidentiality/privacy processes (94%) and good data quality processes (76%), yet half lacked knowledge of what these processes entailed. Many respondents (78%) were unaware if dataset owners had obtained consent from the dataset subjects for research applications of the data. Conclusion Confidentiality/privacy processes and quality control activities undertaken by data custodians were well-regarded. Many respondents included data linkage to additional government datasets in their research. Ease of data access was variable. Some documentation types were well provided and used, but improvement is required for the provision of data quality statements and limitations documentation. Provision of information on participants' informed consent in a dataset is required.
AB - Background Using government health datasets for secondary purposes is widespread; however, little is known on researchers' knowledge and reuse practices within Australia. Objectives To explore researchers' knowledge and experience of governance processes, and their data reuse practices, when using Victorian government health datasets for research between 2008-2020. Method A cross-sectional quantitative survey was conducted with authors who utilised selected Victorian, Australia, government health datasets for peer-reviewed research published between 2008-2020. Information was collected on researchers': data reuse practices; knowledge of government health information assets; perceptions of data trustworthiness for reuse; and demographic characteristics. Results When researchers used government health datasets, 45% linked their data, 45% found the data access process easy and 27% found it difficult. Government-curated datasets were significantly more difficult to access compared to other-agency curated datasets (p = 0.009). Many respondents received their data in less than six months (58%), in aggregated or deidentified form (76%). Most reported performing their own data validation checks (70%). To assist in data reuse, almost 71% of researchers utilised (or created) contextual documentation, 69% a data dictionary, and 62% limitations documentation. Almost 20% of respondents were not aware if data quality information existed for the dataset they had accessed. Researchers reported data was managed by custodians with rigorous confidentiality/privacy processes (94%) and good data quality processes (76%), yet half lacked knowledge of what these processes entailed. Many respondents (78%) were unaware if dataset owners had obtained consent from the dataset subjects for research applications of the data. Conclusion Confidentiality/privacy processes and quality control activities undertaken by data custodians were well-regarded. Many respondents included data linkage to additional government datasets in their research. Ease of data access was variable. Some documentation types were well provided and used, but improvement is required for the provision of data quality statements and limitations documentation. Provision of information on participants' informed consent in a dataset is required.
UR - http://www.scopus.com/inward/record.url?scp=85183788873&partnerID=8YFLogxK
U2 - 10.1371/journal.pone.0297396
DO - 10.1371/journal.pone.0297396
M3 - Article
C2 - 38300890
AN - SCOPUS:85183788873
SN - 1932-6203
VL - 19
JO - PLoS ONE
JF - PLoS ONE
IS - 2
M1 - e0297396
ER -