This week, a non-commercial, open source proof of concept called HIE of One becomes the first standards-based patient-centered health record demonstration. It uses the emerging FHIR standard along with established standards for identity and security management to show how a physician-patient relationship can be independent of any particular institution and therefore as de-centralized as your smartphone messages or your Bitcoin payments.
The history of patient-centered health records begins in 1994 with the Guardian Angel Project at MIT and has inspired many of us. Implementations have come and gone over the past 22 years and today’s massively centralized and institutionally controlled EHRs seem to be headed further and further away from a patient-centered vision. Hacking and information blocking are a concern for patients and legislators. EHRs and government meddling are a source of frustration for physicians. Technology, however, is finally catching up with Guardian Angel’s promise.
Technology does not have to be controlled by institutions. Apple’s iPhones have shown us how personal technology can be beyond the control of both institutions and government. Bitcoin and blockchain has shown how technology for currency and even investment can be beyond the control of both institutions and government. Technology now enables health records that serve the needs of patients and physicians directly without institutional control or interference.
The demonstration at http://hieofone.org is designed to highlight the user experience for both patients and physicians and to influence global standards and US EHR policy. To make it easier to adopt a patient-centred perspective, the demo mimics the patient and physician experience with typical state health information exchanges (HIE) even though no institutional HIE is involved. From the patient perspective, attaching a practice to their patient-centered health record is not much different than “opt-in” to a state HIE. From the physician perspective, the patient-centered health record is just another EHR connected to the state HIE. From a standards and policy perspective, whether a patient is connected via a state HIE, a private HIE like CommonWell, or a decentralized HIE like HIE of One should be irrelevant to the clinician.
Beyond influencing standards and policy to allow for patient-centered health records, the HIE of One project will evolve into a clinically usable open source health record option that physicians can recommend to some or all their patients. In the coming weeks, new blockchain technology will offer a trusted identity management option that does not require Google ID or any other identity federation. Blockchain technology will also be added to provide auditable and legally accountable records of prescriptions and other regulated activity in the context of a patient-controlled health record. Over months, a secure directory will be used to verify physician attributes such as medical license, insurance, and institutional relationships. Independent decision support interfaces, such as the one already in place with GoodRx, will be expanded and documented.
A sustainable patient-centered health record puts the physician-patient relationship first and treats institutional affiliations as optional. An open source approach allows full transparency, peer review, and community innovation. We hope you will try the demo at hieofone.org for yourself, comment here on THCB to keep the conversation going, and consider contributing to our GitHub communities and the HEART workgroup.