Merilyn Riley, Monique F Kilkenny, Kerin Robinson, Sandra G Leggat
{"title":"澳大利亚维多利亚州研究人员对政府卫生数据再利用可信度的看法:对政策和实践的影响。","authors":"Merilyn Riley, Monique F Kilkenny, Kerin Robinson, Sandra G Leggat","doi":"10.1177/18333583241256049","DOIUrl":null,"url":null,"abstract":"<p><p>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. <b>Objectives</b>: 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? <b>Method:</b> 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. <b>Results:</b> Fifty experienced health researchers responded. Most (88%) believed that Victorian government health data were trustworthy. When <i>grouped</i>, data factors and management properties were more important than data provider factors in building trust. The most important <i>individual</i> 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%). <b>Conclusion:</b> Overall, the researchers trusted government health data, but data factors and data management properties were more important than data provider factors in building trust. <b>Implications</b>: 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.\"</p>","PeriodicalId":73210,"journal":{"name":"Health information management : journal of the Health Information Management Association of Australia","volume":" ","pages":"139-149"},"PeriodicalIF":0.0000,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12038074/pdf/","citationCount":"0","resultStr":"{\"title\":\"Researchers' perceptions of the trustworthiness, for reuse purposes, of government health data in Victoria, Australia: Implications for policy and practice.\",\"authors\":\"Merilyn Riley, Monique F Kilkenny, Kerin Robinson, Sandra G Leggat\",\"doi\":\"10.1177/18333583241256049\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>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. <b>Objectives</b>: 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? <b>Method:</b> 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. <b>Results:</b> Fifty experienced health researchers responded. Most (88%) believed that Victorian government health data were trustworthy. When <i>grouped</i>, data factors and management properties were more important than data provider factors in building trust. The most important <i>individual</i> 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%). <b>Conclusion:</b> Overall, the researchers trusted government health data, but data factors and data management properties were more important than data provider factors in building trust. <b>Implications</b>: 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.\\\"</p>\",\"PeriodicalId\":73210,\"journal\":{\"name\":\"Health information management : journal of the Health Information Management Association of Australia\",\"volume\":\" \",\"pages\":\"139-149\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2025-05-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12038074/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Health information management : journal of the Health Information Management Association of Australia\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1177/18333583241256049\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2024/7/24 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Health information management : journal of the Health Information Management Association of Australia","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1177/18333583241256049","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/7/24 0:00:00","PubModel":"Epub","JCR":"","JCRName":"","Score":null,"Total":0}
Researchers' perceptions of the trustworthiness, for reuse purposes, of government health data in Victoria, Australia: Implications for policy and practice.
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."