3 Steps to Patient Data Ownership and Better Interoperability

If health systems can buy in and enable patients to access their health records, the long-term benefits could be substantial.

Interoperability isn’t solely a problem for institutions, and one way to rectify it might be to give patients better ownership of their health data. A new perspective published in JAMA offers a potential approach to doing that.

The case made by the authors requires 3 core elements:

  • The establishment of common data elements in health records
  • Creating a “patient encounter data receipt” from every medical visit
  • Requiring a data use agreement (DUA) between patients and the entities that manage their healthcare information

The first point is important for the others. A “Standard Health Record” could pave the way for better interoperability, both in a semantic and clinical sense.

Given that patients already generate reams of new data through wearables and health-tracking apps, the authors write that this information should be paired with data created from medical testing and doctor input. They argue it would allow for the creation of a more comprehensive look at a patient’s health, and would also support secondary uses for better research and public health surveillance.

The trio of authors identify policy mechanisms that might enable implementation: for the Standard Health Record, they noted a meaningful use objective of providing patients “the ability to view, download, or transmit certain health information, including vital signs and laboratory tests.” They also mention a section of the 21st Century Cures Act that calls for the Department of Health and Human Services (DHS) to “evaluate the need” for common data elements.

The second tenet, a “patient encounter data receipt,” would hinge on the first point of standardization. It would require any healthcare provider to deliver “not just the visit summary, but images, billing, and any other related information,” in a “timely” manner. “Modest EHR system changes would be required to implement receipt processes,” the authors write, but if automated, “could minimize clinician and patient burden.”

Meaningful use and the Merit-based Incentive Payment System element of MACRA are both policy precedents for such a requirement, and the authors write once again that 21st Century Cures enables DHS to expand guidance on the matter. They also offer that small tweaks to HIPAA could expand patients’ right of access to such health information.

The final call, for a DUA between patients and whatever entity stores and processes their health information, “must necessarily be patient-centered, but must also enable clinicians and payers to trust and use the patient’s digital health data as necessary.”

In essence, it would be a contract that obligates health data managers to provide patients privacy, security, and access to their data. These agreements could be tailored on a patient-by-patient basis, for instance, depending on whether or not the patient wants to update the EHR with secondary information that they generate. Given the number and variety of institutions that currently manage health data, however, they pose that a separate trustee model may be useful in the implementing this final step.

“Health care must find a way to shift from ‘the doctor will see you now’ to ‘the patient will see the doctor now’,” write the authors, though they acknowledge a tough road toward widespread clinician buy-in.

“Today’s existing architecture, however, fails both patients and clinicians,” the authors write. They believe precedent exists and that the long-term benefits of comprehensive, patient-controlled health data could save clinicians time, enable patients to take better care of themselves, and avoid waste, like redundant medical tests, which often spring up from a lack of interoperability.

The article, “The Pathway to Patient Data Ownership and Better Health,” was written by Katherine A. Mikk, JD and Harry A. Sleeper of the MITRE Corporation and Eric J. Topol, MD of the Scripps Translational Science Institute. It is published in the current issue of JAMA.