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    Original Investigation
    Ethics
    July 9, 2020

    Health Policy and Privacy Challenges Associated With Digital Technology

    Author Affiliations
    • 1Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia
    • 2Perelman School of Medicine, Division of General Internal Medicine, University of Pennsylvania, Philadelphia
    • 3Center for Public Health Initiatives, University of Pennsylvania, Philadelphia
    • 4Perelman School of Medicine, Department of Emergency Medicine, University of Pennsylvania, Philadelphia
    • 5Penn Medicine Center for Health Care Innovation, Philadelphia, Pennsylvania
    • 6Department of Psychology, Indiana University–Purdue University Indianapolis, Indianapolis
    • 7Perelman School of Medicine, Department of Family Medicine and Community Health, University of Pennsylvania, Philadelphia
    JAMA Netw Open. 2020;3(7):e208285. doi:10.1001/jamanetworkopen.2020.8285
    Key Points español 中文 (chinese)

    Question  What challenges for health privacy are associated with digital technology?

    Findings  In this qualitative study, 5 key challenges for health privacy were associated with digital technology: invisibility (people unaware of how they are tracked), inaccuracy (flawed data), immortality (data never expire), marketability (data are frequently bought and sold), and identifiability (individuals can be readily reidentified).

    Meaning  The findings suggest that a sector-specific approach to digital technology privacy in the US may be associated with inadequate health privacy protections.

    Abstract

    Importance  Digital technology is part of everyday life. Digital interactions generate large amounts of data that can reveal information about the health of individual consumers (the digital health footprint).

    Objective  Τo describe health privacy challenges associated with digital technology.

    Design, Setting, and Participants  For this qualitative study, In-depth, semistructured, qualitative interviews were conducted with 26 key experts from diverse fields in the US between January 1 and July 31, 2018. Open-ended questions and hypothetical scenarios were used to identify sources of digital information that contribute to consumers’ health-relevant digital footprints and challenges for health privacy. Participants also completed a survey instrument on which they rated the health relatedness of digital data sources.

    Main Outcomes and Measures  Health policy challenges associated with digital technology based on qualitative responses to expert interviews.

    Results  Although experts’ ratings of digital data sources suggested a possible distinction between health and nonhealth data, qualitative interviews uniformly indicated that all data can be health data, particularly when aggregated across sources and time. Five key characteristics of the digital health footprint were associated with health privacy policy challenges: invisibility (people are unaware of how their data are tracked), inaccuracy (data in the digital health footprint can be inaccurate), immortality (data have no expiration date and are aggregated over time), marketability (data have immense commercial value and are frequently bought and sold), and identifiability (individuals can be readily reidentified and anonymity is nearly impossible to achieve). There are virtually no regulatory structures in the US to protect health privacy in the context of the digital health footprint.

    Conclusions and Relevance  The findings suggest that a sector-specific approach to digital technology privacy in the US may be associated with inadequate health privacy protections.

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