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Added Value from Secondary Use of Person Generated Health Data in Consumer Health Informatics.

P-Y Hsueh, Y-K Cheung, S Dey

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    Person Generated Health Data (PGHD) offers untapped resources for secondary use in healthcare. This paper outlines best practices for leveraging PGHD across care coordination, cancer care, adaptive trials, and biomedical research, addressing key challenges.

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    Area of Science:

    • Digital Health
    • Health Informatics
    • Biomedical Research

    Background:

    • Person Generated Health Data (PGHD) is increasingly collected from various environments.
    • Traditionally used for specific purposes, PGHD is now recognized as a valuable resource for secondary applications.
    • The secondary use of PGHD is an evolving field requiring structured best practices.

    Purpose of the Study:

    • To outline best practices for the secondary use of Person Generated Health Data (PGHD).
    • To explore the potential of PGHD in diverse healthcare and research settings.
    • To identify and discuss overarching challenges and opportunities in PGHD secondary use.

    Main Methods:

    • An outline of best practices was developed, rather than a systematic review.
    • Key opinion leaders presented their perspectives on primary and secondary PGHD use.
    • Overarching themes including privacy, interpretability, interoperability, utility, and ethics were considered.

    Main Results:

    • PGHD secondary use was examined in four focus areas: shared care plans, cancer care, adaptive trials, and biomedical research.
    • Applications include care coordination, sensor data for oncology, personal informatics evaluation, and integrating environmental risk with clinical/omics data.
    • Challenges related to privacy, data interpretation, public understanding, and risk-benefit analysis were identified.

    Conclusions:

    • Technological advancements necessitate societal discussion on PGHD's impact on privacy and data interpretation.
    • Effective secondary use of PGHD can facilitate patient-centered services and requires addressing identified barriers.
    • The identified opportunities and barriers provide actionable insights for organizations seeking to utilize PGHD.