Authors
Jenifer Sunrise Winter, Elizabeth J Davidson
Publication date
2020/12/15
Journal
TPRC48: The 48th research conference on communication, information and internet Policy
Description
Patient-generated health data (PGHD), created and captured from patients via wearable devices and mobile apps, are proliferating outside of clinical settings. Examples include sleep tracking, fitness trackers, continuous glucose monitors, and RFID-enabled implants, with many additional biometric or health surveillance applications in development or envisioned. These data are included in growing stockpiles of personal health data being mined for insight via big data analytics and artificial intelligence/deep learning technologies. Governing these data resources to facilitate patient care and health research while preserving individual privacy and autonomy will be challenging, as PGHD are the least regulated domains of digitalized personal health data (US Department of Health and Human Services, 2018). When patients themselves collect digitalized PGHD using “apps” provided by technology firms, these data fall outside of conventional health data regulation, such as HIPAA. Instead, PGHD are maintained primarily on the information technology infrastructure of vendors, and data are governed under the IT firm’s own privacy policies and within the firm’s intellectual property rights. Dominant narratives position these highly personal data as valuable resources to transform healthcare, stimulate innovation in medical research, and engage individuals in their health and healthcare. However, ensuring privacy, security, and equity of benefits from PGHD will be challenging. PGHD can be aggregated and, despite putative “deidentification,” be linked with other health, economic, and social data for predictive analytics. As large tech companies enter the …
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