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  • Personal health information in research: Perceived risk, trustworthiness and opinions from patients attending a tertiary healthcare facility

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    Krahe230644.pdf (1.217Mb)
    Author(s)
    Krahe, Michelle
    Milligan, Eleanor
    Reilly, Sheena
    Griffith University Author(s)
    Milligan, Eleanor
    Krahe, Michelle
    Reilly, Sheena
    Year published
    2019
    Metadata
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    Abstract
    Background: Personal health information is a valuable resource to the advancement of research. In order to achieve a comprehensive reform of data infrastructure in Australia, both public engagement and building social trust is vital. In light of this, we conducted a study to explore the opinions, perceived risks and trustworthiness regarding the use of personal health information for research, in a sample of the public attending a tertiary healthcare facility. Methods: The Consumer Opinions of Research Data Sharing (CORDS) study was a questionnaire-based design with 249 participants who were attending a public tertiary ...
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    Background: Personal health information is a valuable resource to the advancement of research. In order to achieve a comprehensive reform of data infrastructure in Australia, both public engagement and building social trust is vital. In light of this, we conducted a study to explore the opinions, perceived risks and trustworthiness regarding the use of personal health information for research, in a sample of the public attending a tertiary healthcare facility. Methods: The Consumer Opinions of Research Data Sharing (CORDS) study was a questionnaire-based design with 249 participants who were attending a public tertiary healthcare facility located on the Gold Coast, Australia. The questionnaire was designed to explore opinions and evaluate trust and perceived risk in research that uses personal health information. Concept analysis was used to identify key dimensions of perceived risk. Results: Overall participants were supportive of research, highly likely to participate and mostly willing to share their personal health information. However, where the perceived risk of data misuse was high and trust in others was low, participants expressed hesitation to share particular types of information. Performance, physical and privacy risks were identified as key dimensions of perceived risk. Conclusion: This study highlights that while participant views on the use of personal health information in research is mostly positive, where there is perceived risk in an environment of low trust, support for research decreases. The three key findings of this research are that willingness to share data is contingent upon: (i) data type; (ii) risk perception; and (iii) trust in who is accessing the data. Understanding which factors play a key role in a person's decision to share their personal health information for research is vital to securing a social license.
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    Journal Title
    Journal of Biomedical Informatics
    Volume
    95
    DOI
    https://doi.org/10.1016/j.jbi.2019.103222
    Copyright Statement
    © 2019 Journal of Biomedical Informatics. The attached file is reproduced here in accordance with the copyright policy of the publisher. Please refer to the journal's website for access to the definitive, published version.
    Subject
    Biological sciences
    Biomedical and clinical sciences
    Applied ethics not elsewhere classified
    Publication URI
    http://hdl.handle.net/10072/385853
    Collection
    • Journal articles

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