Designing health outcomes through patient data ownership

Abstract

A patient's health data is more than the sum of information in their electronic health record. Primary health care is evolving with comprehensive determinants of health and systems medicine models, yet electronic health data remain mostly fragmented and siloed. All data is health data, with an estimated 80%-90% of modifiable contributors to health happening outside the clinical setting. 1 Patient-Generated Health Data (or PGHD) is "healthrelated data created and recorded by or from patients outside of the clinical setting." 2 Clinical data, modifiable contributors, and PGHD, together, build a rich picture of health data. Combined, they become the true picture of an individual's health. 3,4 This picture includes personal circumstances and choices, apps and wearables that log movement, adverse childhood events, zip code of residence, diet, education, salary, dental records, medical device information, stress level, medical conditions, social history, and more. All these data combine to become a true picture of an individual's health. 4,5 OUR HEALTH DATA IS BROKENThis comprehensive picture of one's health data remains broken, however, with fragmented health data existing across siloed systems. These data are in pieces, made of two sides. One side contains health bytes such as biometric measurements, exam notes, or demographic data.The other side is location data-where that health information is documented and stored by different companies. Be it a phone app, office visit or wearable technology, each piece of health data is stored where it's collected (a digital health record, of sorts), by the collector.