{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T09:25:54Z","timestamp":1777627554720,"version":"3.51.4"},"reference-count":81,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2022,4,6]],"date-time":"2022-04-06T00:00:00Z","timestamp":1649203200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2022,4,6]],"date-time":"2022-04-06T00:00:00Z","timestamp":1649203200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"Australian Government Medical Research Futures Fund (MRFF) Rapid Applied Research Translation Initiative 2.1 scheme via Melbourne Academic Centre for Health"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Med Inform Decis Mak"],"published-print":{"date-parts":[[2022,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>Most people receive most of their health care in in Australia in primary care, yet researchers and policymakers have limited access to resulting clinical data. Widening access to primary care data and linking it with hospital or other data can contribute to research informing policy and provision of services and care; however, limitations of primary care data and barriers to access curtail its use. The Australian Health Research Alliance (AHRA) is seeking to build capacity in data-driven healthcare improvement; this study formed part of its workplan.\n<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>The study aimed to build capacity for data driven healthcare improvement through identifying primary care datasets in Australia available for secondary use and understand data quality frameworks being applied to them, and factors affecting national capacity for secondary use of primary care data from the perspectives of data custodians and users. Purposive and snowball sampling were used to disseminate a questionnaire and respondents were invited to contribute additional information via semi-structured interviews.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>Sixty-two respondents collectively named 106 datasets from eclectic sources, indicating a broad conceptualisation of what a primary care dataset available for secondary use is. The datasets were generated from multiple clinical software systems, using different data extraction tools, resulting in non-standardised data structures. Use of non-standard data quality frameworks were described by two-thirds of data custodians. Building trust between citizens, clinicians, third party data custodians and data end-users was considered by many to be a key enabler to improve primary care data quality and efficiencies related to secondary use. Trust building qualities included meaningful stakeholder engagement, transparency, strong leadership, shared vision, robust data security and data privacy protection. Resources to improve capacity for primary care data access and use were sought for data collection tool improvements, workforce upskilling and education, incentivising data collection and making data access more affordable.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>The large number of identified Australian primary care related datasets suggests duplication of labour related to data collection, preparation and utilisation. Benefits of secondary use of primary care data were many, and strong national leadership is required to reach consensus on how to address limitations and barriers, for example accreditation of EMR clinical software systems and the adoption of agreed data and quality standards at all stages of the clinical and research data-use lifecycle. The study informed the workplan of AHRA\u2019s Transformational Data Collaboration to improve partner engagement and use of clinical data for research.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s12911-022-01830-9","type":"journal-article","created":{"date-parts":[[2022,4,6]],"date-time":"2022-04-06T19:03:43Z","timestamp":1649271823000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":18,"title":["Identifying primary care datasets and perspectives on their secondary use: a survey of Australian data users and custodians"],"prefix":"10.1186","volume":"22","author":[{"given":"Rachel","family":"Canaway","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Douglas","family":"Boyle","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jo-Anne","family":"Manski-Nankervis","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kathleen","family":"Gray","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2022,4,6]]},"reference":[{"key":"1830_CR1","unstructured":"Australian Bureau of Statistics. 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The research was performed in accordance with the approved protocol and the Australian National Statement on Ethical Conduct in Human Research. The online questionnaire commenced with a consent statement that made explicit that on completing and submitting the questionnaire consent to participated was implied. What that consent entailed was detailed in a downloadable plain language explanatory statement. The consent-related documentation for survey and interview participants acknowledged that information was being gathered from a small number of experts, so despite the identities and personal details of participants being withheld from the results, we could not guarantee participant anonymity given the relatively small pool of eligible participants. In addition, participants had opportunity to opt in to being publicly acknowledged, in published results, as having contributed to the research. Informed consent was obtained from all participants.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"KG has no competing interests. DB, JMN and RC were associated with the Data for Decisions research initiative . DB is the Director of the HaBIC Research Information Technology Unit, Department of General Practice that develops and implements the GRHANITE\u00ae research data collection tool utilised in a number of GP data collections including NPS MedicineInsight and Data for Decisions, and is a member of the Melbourne Academic Centre for Health (MACH) Primary Care Committee and the Data Driven Healthcare Improvement Committee, and lead of the AHRA\/MACH Transformational Data Collaboration.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"94"}}