The Pathway to Patient Data Ownership and Better Health

An article by the JAMA Network. 

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. These additional sources of data, whether patient-generated, genomic, or other, are critical for a comprehensive picture of an individual’s health.

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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. 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. 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.

Health care, under pressure to embrace interoperability, is poised for transformation. The potential for future system improvements is vast, but depends, in part, on increased patient participation. Health care must find a way to shift from “the doctor will see you now” to “the patient will see the doctor now. Patients need engagement beyond passively receiving services, but this will be challenging until they can easily access and use their health data. For this to proceed, control of health data must be transferred to the patient or the patient’s authorized representative.

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More specifically, to obtain active patient engagement and health system improvement, 3 components are necessary: (1) common data elements that enable the sharing and merging of health data from multiple sources; (2) a patient encounter data receipt, comprised of relevant health data from each health care encounter, automatically pushed to the patient’s complete digital health record; and (3) a contract between patients and third-party health data managers (eg, health care organizations and commercial entities) that enables individuals to control their longitudinal digital health record. Most of these components already exist in some form, requiring only minor adjustments to effect health system transformation.

Read the full article at JAMA.

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