Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia.
Perelman School of Medicine, Division of General Internal Medicine, University of Pennsylvania, Philadelphia.
JAMA Netw Open. 2020 Jul 1;3(7):e208285. doi: 10.1001/jamanetworkopen.2020.8285.
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).
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.
Health policy challenges associated with digital technology based on qualitative responses to expert interviews.
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.
The findings suggest that a sector-specific approach to digital technology privacy in the US may be associated with inadequate health privacy protections.
数字技术是日常生活的一部分。数字交互产生大量数据，可以揭示有关个体消费者健康状况的信息（数字健康足迹）。
描述与数字技术相关的健康隐私挑战。
设计、设置和参与者：这项定性研究于 2018 年 1 月 1 日至 7 月 31 日期间，在美国不同领域的 26 名专家进行了深入、半结构化的定性访谈。采用开放式问题和假设情景，以确定有助于消费者健康相关数字足迹形成的数字信息来源以及健康隐私面临的挑战。参与者还完成了一份关于数字数据源与健康相关度的评估工具。
根据专家访谈的定性答复，与数字技术相关的健康政策挑战。
尽管专家对数字数据源的评分表明健康数据和非健康数据之间可能存在差异，但定性访谈一致表明，所有数据都可能是健康数据，特别是当跨来源和时间进行汇总时。数字健康足迹的五个关键特征与健康隐私政策挑战相关：不可见性（人们不知道自己的数据是如何被跟踪的）、不准确性（数字健康足迹中的数据可能不准确）、永久性（数据没有截止日期，并且随着时间的推移而被汇总）、可销售性（数据具有巨大的商业价值，并且经常被买卖）以及可识别性（个人可以很容易地被重新识别，几乎不可能实现匿名）。在美国，几乎没有监管结构来保护数字健康足迹背景下的健康隐私。
这些发现表明，美国针对数字技术隐私的特定部门方法可能与不充分的健康隐私保护相关。
