Researchers' perceptions of the trustworthiness, for reuse purposes, of government health data in Victoria, Australia: Implications for policy and practice
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Riley, Merilyn
[1
]
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Kilkenny, Monique F.
[2
,3
,5
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Robinson, Kerin
[1
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Leggat, Sandra G.
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机构:
La Trobe Univ, Melbourne, Vic, Australia
James Cook Univ, Townsville, AustraliaLa Trobe Univ, Melbourne, Vic, Australia
Leggat, Sandra G.
[1
,4
]
机构:
[1] La Trobe Univ, Melbourne, Vic, Australia
[2] Monash Univ, Melbourne, Vic, Australia
[3] Univ Melbourne, Melbourne, Vic, Australia
[4] James Cook Univ, Townsville, Australia
[5] Florey Inst Neurosci & Mental Hlth, Melbourne, Vic, Australia
data sharing;
health information management;
data analysis;
data quality;
Data trust;
government;
data curation;
data reuse;
secondary data;
TRUST;
SCIENTISTS;
D O I:
10.1177/18333583241256049
中图分类号:
R19 [保健组织与事业(卫生事业管理)];
学科分类号:
摘要:
In 2022 the Australian Data Availability and Transparency Act (DATA) commenced, enabling accredited "data users" to access data from "accredited data service providers." However, the DATA Scheme lacks guidance on "trustworthiness" of the data to be utilised for reuse purposes. Objectives: To determine: (i) Do researchers using government health datasets trust the data? (ii) What factors influence their perceptions of data trustworthiness? and (iii) What are the implications for government and data custodians? Method: Authors of published studies (2008-2020) that utilised Victorian government health datasets were surveyed via a case study approach. Twenty-eight trust constructs (identified via literature review) were grouped into data factors, management properties and provider factors. Results: Fifty experienced health researchers responded. Most (88%) believed that Victorian government health data were trustworthy. When grouped, data factors and management properties were more important than data provider factors in building trust. The most important individual trust constructs were: "compliant with ethical regulation" (100%) and "monitoring privacy and confidentiality" (98%). Constructs of least importance were knowledge of "participant consent" (56%) and "major focus of the data provider was research" (50%). Conclusion: Overall, the researchers trusted government health data, but data factors and data management properties were more important than data provider factors in building trust. Implications: Government should ensure the DATA Scheme incorporates mechanisms to validate those data utilised by accredited data users and data providers have sufficient quality (intrinsic and extrinsic) to meet the requirements of "trustworthiness," and that evidentiary documentation is provided to support these "accredited data."
机构:
Division of Quality Improvement, Centers for Medicare and Medicaid Services, JFK Federal Building, Boston, MA
Freelance Editor, Medford, MADivision of Quality Improvement, Centers for Medicare and Medicaid Services, JFK Federal Building, Boston, MA