Year: 2019
Type: conference-paper
Abstract: With rising popularity of mobile health apps and wearable monitoring devices, patient-generated health data (PGHD) are now rapidly developing outside of clinical encounters (Deering, 2013; U.S.Department of Health and Human Services, 2016).PGHD are instead generated in many and varied settings, for instance when patients monitor their own activity or sleep patterns using wearable trackers (L'Amie, 2018), monitor and report their blood glucose levels with continuous glucose monitors (Brockman, 2019), use meditation and relaxation mobile apps with brain-wave sensing devices (Fowler, 2019), track pregnancy experiences (Harwell, 2019), or track infants' urination through "smart diapers" (Baca, 2019), to name just a few.Healthcare leaders and policy analysts view such data as a vital resource for health system improvement and innovation and for patient engagement, but governing these data resources for patient care or research will be challenging, as PGHD are the least understood and regulated domains of digitalized personal health data (U.S.Department of Health and Human Services, 2018).Because patients themselves collect digitalized PGHD using mobile phones and "apps" provided by technology firms, often outside clinical encounters, these data fall outside of conventional health data regulation, such as HIPAA (U.S.Department of Health and Human Services, 2016, 2018).Instead PGHD are maintained primarily on the information technology (IT) infrastructure of vendors who provide the mobile apps and devices, and data are governed under the IT firm's own privacy policies and within the firm's intellectual property rights in data.Patients can view and may be able to download their data to devices they control, and they may be able share data with clinicians, thus replicating data in multiple locations.Once integrated into a clinician's HIT systems, governance of some PGHD falls under HIPAA regulations, U.S.
Language: English
Subfield: Health Information Management
Field: Health Professions
Domain: Health Sciences
Open Access status: green
Funder: National Science Foundation
OpenAlex ID: W2990046029