Curtin University Reports Findings in Computers (Public preference on sharing health data to inform research, health policy and clinical practice in Australia: A stated preference experiment): Computers

2023 DEC 06 (NewsRx) -- By a News Reporter-Staff News Editor at Insurance Daily News -- New research on Computers is the subject of a report. According to news reporting originating in Perth, Australia, by NewsRx journalists, research stated, “To investigate public willingness to share sensitive health information for research, health policy and clinical practice. A total of 1,003 Australian respondents answered an online, attribute-driven, survey in which participants were asked to accept or reject hypothetical choice sets based on a willingness to share their health data for research and frontline-medical support as part of an integrated health system.”

Financial support for this research came from Western Australian Health Translation Network.

The news reporters obtained a quote from the research from Curtin University, “The survey consisted of 5 attributes: Stakeholder access for analysis (Analysing group); Type of information collected; Purpose of data collection; Information governance; and Anticipated benefit; the results of which were analysed using logistic regression. When asked about their preference for sharing their health data, respondents had no preference between data collection for the purposes of clinical practice, health policy or research, with a slight preference for having government organisations manage, govern and curate the integrated datasets from which the analysis was being conducted. The least preferred option was for personal health records to be integrated with insurance records or for their data collected by privately owned corporate organisations. Individuals preferred their data to be analysed by a public healthcare provider or government staff and expressed a dislike for any private company involvement. The findings from this study suggest that Australian consumers prefer to share their health data when there is government oversight, and have concerns about sharing their anonymised health data for clinical practice, health policy or research purposes unless clarity is provided pertaining to its intended purpose, limitations of use and restrictions to access. Similar findings have been observed in the limited set of existing international studies utilising a stated preference approach. Evident from this study, and supported by national and international research, is that the establishment and preservation of a social license for data linkage in health research will require routine public engagement as a result of continuously evolving technological advancements and fluctuating risk tolerance.”

According to the news reporters, the research concluded: “Without more work to understand and address stakeholder concerns, consumers risk being reluctant to participate in data-sharing and linkage programmes.”

For more information on this research see: Public preference on sharing health data to inform research, health policy and clinical practice in Australia: A stated preference experiment. PLOS ONE, 2023;18(11). PLOS ONE can be contacted at: Public Library Science, 1160 Battery Street, Ste 100, San Francisco, CA 94111, USA. (Public Library of Science - www.plos.org; PLOS ONE - www.plosone.org)

Our news correspondents report that additional information may be obtained by contacting Richard Norman, School of Population Health, Curtin University, Perth, University of Western Australia, Australia. Additional authors for this research include Richard J. Varhol, Sean Randall, Crystal Man Ying Lee, Luke Trevenen, James H. Boyd and Suzanne Robinson.

The direct object identifier (DOI) for that additional information is: https://doi.org/10.1371/journal.pone.0290528. This DOI is a link to an online electronic document that is either free or for purchase, and can be your direct source for a journal article and its citation.

The publisher of the journal PLOS ONE can be contacted at: Public Library Science, 1160 Battery Street, Ste 100, San Francisco, CA 94111, USA.

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