The Pathway to Patient Data Ownership and Better Health

Katherine A. Mikk, Harry A. Sleeper, and Eric J. Topol | JAMA | September 25, 2017

Digital health data are rapidly expanding to include patient-reported outcomes, patient-generated health data, and social determinants of health. Measurements collected in clinical settings are being supplemented by data collected in daily life, such as data derived from wearable sensors and smartphone apps, and access to other data, such as genomic data, is rapidly increasing. One projection suggests that a billion individuals will have their whole genome sequenced in the next several years.1 These additional sources of data, whether patient-generated, genomic, or other, are critical for a comprehensive picture of an individual’s health.

Enabling access to personal health data, clinical or patient-generated, may benefit patients and health care professionals. Research is beginning to show that providing patients with their complete health data may help improve their health. For example, timely access to laboratory results can increase patient engagement.2 Access to physician notes after appointments appears to encourage individuals to improve their health and participate in decision-making, with electronically engaged patients demonstrating more successful medication adherence, quality outcomes, and symptom management.3 Economic benefits may include the avoidance of duplicative imaging or laboratory tests.4 Clinicians may also benefit from more informed patients.

For example, they may score higher in quality performance programs because patients who are more informed may better adhere to treatment plans and hence may improve clinician scores. Despite growing evidence of such benefits, albeit with limited patient outcomes, and legislative and regulatory initiatives that facilitate electronic patient engagement, patients’ access to a complete, longitudinal digital health record remains rare. While such access may be possible for certain patients who receive care within a few select health systems, it remains elusive for many others, including patients who have changed physicians, lived in different places, have multiple chronic conditions, or who have had services provided outside of a clinical setting such as through a home health service.5...