Three healthcare experts laid out a series of steps the healthcare industry must take to transfer data ownership from the provider to the patient in an op-ed published in JAMA Sept. 25.
The authors — Katherine A. Mikk and Harry A. Sleeper of The Mitre Corp.'s Open Health Services and Eric J. Topol, MD, of La Jolla, Calif.-based Scripps Translational Science Institute — noted how access to medical data can promote patient engagement and improve health outcomes.
However, patients often lack appropriate access to complete, longitudinal digital health records.
"Patients need engagement beyond passively receiving services, but this will be challenging until they can easily access and use their health data," the authors wrote. "For this to proceed, control of health data must be transferred to the patient or the patient's authorized representative."
Here are three steps the authors proposed to transfer data ownership to patients.
1. Establish common data elements. A set of standardized data terms will enable healthcare organizations, commercial entities and health payers to share and merge data from multiple sources into a centralized, patient-owned digital health record. With common data elements, information from EHRs, sensors and smartphones would all be eligible to be added to a patient's record.
2. Provide patients with a "data receipt." A patient should receive a timely "data receipt" after a physician visit. This receipt would comprise data from the encounter, including the visit summary, medical images and billing information. The goal of the receipt would be to hold healthcare organizations accountable for updating patient records with timely information.
3. Manage ownership through data use agreement contracts. A patient should sign a DUA with each third-party entity that contributes to their digital health record, whether a hospital or insurer. The DUA would ensure data contributors understand how to uphold the quality and security of patient data and under what circumstances they may use patient data.
"Fostering widespread clinician buy-in to a patient-centric approach to health data may be challenging," the authors acknowledged. "Today's existing architecture, however, fails both patients and clinicians. With a new approach, clinicians can truly partner with patients, receiving the benefit of improved quality performance through increased patient engagement and improved, longitudinal digital health records."
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