Free Independent Health Records

Dr. Adrian Gropper is working to put patients in charge of their health records, arguably the most valuable and most personal kinds of connected information about a person. They encompass elements of anonymous, pseudonymous, and verified identity and they interact with both regulated institutions and licensed professionals. Gropper’s research centers on self-sovereign technology for management of personal information both in control of the individual and as hosted or curated by others. The HIE of One project is a free software reference implementation and currently the only standards-based patient-centered record. The work implements a self-sovereign UMA Authorization Server and is adding blockchain identity as self-sovereign technology to enable licensed practitioners to authenticate and, for example, write a compliant prescription directly into the patient’s self-sovereign health record.

The public interest threads through many aspects of this work. Detailed health records are valuable sources for medical research, social justice, machine learning, big data, as well as directly related to 5-20% of the activity in terms of GDP. Identity and related aspects of this work, including security, are of global importance including refugees and societies with weak government and private institutions.

This is a talk in the monthly Digital Health @ Harvard Brown Bag Lunch Series, which is co-hosted by the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics and the Berkman Klein Center for Internet & Society at Harvard University.

About Dr. Gropper

Dr. Gropper is a pioneer in patient-centered and patient-controlled health records on the Internet. He holds an engineering degree from MIT and an MD from Harvard Medical School. Early work on telemedicine and picture archiving and communications systems (PACS) with Massachusetts General Hospital also introduced him to MIT’s Guardian Angel project that many consider the parent of many of today’s patient-facing technologies. In 1995, Dr. Gropper founded AMICAS (NAS:AMCS) as the first Web-based radiology PACS and the first to provide direct links to diagnostic imaging in electronic health records.

Dr. Gropper founded MedCommons in 2004 to develop software for image-enabled, patient-centered health records supporting all of a patient’s caregivers. Dr. Gropper participated in many early standardization efforts including IHE, HITSP, Liberty Alliance and the Continuity of Care Record steering committee. He also serves on the Massachusetts Health Information Exchange Technology Workgroup, the Massachusetts Medical Society Committee for Information Technology and Markle Foundation panels. Currently he participates as a patient-access advocate in the NwHIN Direct Project, Blue Button Plus health information exchange, and the NSTIC / IDESG cyber ID initiative. His focus is technology that applies fair information practice to our new world of continuous surveillance and predictive analytics.

Dr. Gropper is also CTO of the non-profit Patient Privacy Rights foundation where he represents the interest of physicians and patients in the technology standards and policies that are an ever growing part of our lives. He founded the HIE of One open source reference implementation project and a co-founder of OpenID HEAlth Relationship Trust (HEART). His paper won a prize at ONC’s 2016 Blockchain Health competition.

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