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    Original Investigation
    Health Informatics
    August 21, 2019

    Patient Perspectives About Decisions to Share Medical Data and Biospecimens for Research

    Author Affiliations
    • 1Department of Biomedical Informatics, UC San Diego Health, University of California, San Diego, La Jolla
    • 2School of Nursing, Duke University, Durham, North Carolina
    • 3Office of Graduate Studies and Research, California State University, San Marcos
    • 4School of Biomedical Informatics, University of Texas Health Science Center, Houston
    • 5Department of Informatics, University of California, Irvine
    • 6Division of Health Services Research and Development, Veterans Affairs San Diego Healthcare System, La Jolla, California
    JAMA Netw Open. 2019;2(8):e199550. doi:10.1001/jamanetworkopen.2019.9550
    Key Points español 中文 (chinese)

    Question  Do patient decisions about sharing their electronic health records and biospecimens for research vary according to health care institution, data or biospecimen item, patient characteristics, data recipient, and format in which consent choices are presented?

    Findings  In this survey study of 1246 patients who completed a data and biospecimen sharing survey after being randomly assigned to 1 of 4 options with different layout and formats of indicating sharing preferences, patient preference for sharing compared with no sharing was significantly higher after controlling for covariates when presented with the opt-out compared with the opt-in format. The form layout (detailed vs simple) was not associated with the sharing decision.

    Meaning  The findings suggest that many patients may be willing to share data and biospecimens for research and that researchers’ affiliations, the design of consent forms, and patient age and health literacy are associated with patient sharing decisions.


    Importance  Patients increasingly demand transparency in and control of how their medical records and biospecimens are shared for research. How much they are willing to share and what factors influence their sharing preferences remain understudied in real settings.

    Objectives  To examine whether and how various presentations of consent forms are associated with differences in electronic health record and biospecimen sharing rates and whether these rates vary according to user interface design, data recipients, data and biospecimen items, and patient characteristics.

    Design, Setting, and Participants  For this survey study, a data and biospecimen sharing preference survey was conducted at 2 academic hospitals from May 1, 2017, to September 31, 2018, after simple randomization of patients to 1 of 4 options with different layout and formats of indicating sharing preferences: opt-in simple, opt-in detailed, opt-out simple, and opt-out detailed.

    Interventions  All participants were presented with a list of data and biospecimen items that could be shared for research within the same health care organization or with other nonprofit or for-profit institutions. Participating patients were randomly asked to select the items that they would share (opt-in) or were asked to select items they would not share (opt-out). Patients in these 2 groups were further randomized to select only among 18 categories vs 59 detailed items (simple vs detailed form layout).

    Main Outcomes and Measures  The primary end points were the percentages of patients willing to share data and biospecimen categories or items.

    Results  Among 1800 eligible participants, 1246 (69.2%) who completed their data sharing survey were included in the analysis, and 850 of these patients (mean [SD] age, 51.1 [16.7] years; 507 [59.6%] female; 677 [79.6%] white) responded to the satisfaction survey. A total of 46 participants (3.7%) declined sharing with the home institution, 352 (28.3%) with nonprofit institutions, and 590 (47.4%) with for-profit institutions. A total of 836 (67.1%) indicated that they would share all items with researchers from the home institution. When comparing opt-out with opt-in interfaces, all 59 sharing choice variables (100%) were associated with the sharing decision. When comparing simple with detailed forms, only 14 variables (23.7%) were associated with the sharing decision.

    Conclusions and Relevance  The findings suggest that most patients are willing to share their data and biospecimens for research. Allowing patients to decide with whom they want to share certain types of data may affect research that involves secondary use of electronic health records and/or biosamples for research.