Data Revolution in Healthcare: New Frontiers in Interoperability and Data Exchange With FHIR

In April 2024, HSI presented the final two seminars this academic year that are part of the seminar series, "Sparking the Data Revolution in Healthcare via FHIR”, that HSI cohosted with the Martin Trust Center for MIT Entrepreneurship.

Earlier seminars explored the origin and development of FHIR, which you can read about here and here.

There are a number of FHIR accelerators designed to create open-source standards for data sharing, with the goal of national health data interoperability. On April 11, Dr. Su Chen spoke about her work as the Program Manager and Clinical Director of one of these accelerators, CodeX, which focuses on clinical specialties, such as oncology. Chen’s work is on the ground level of creating open-source standards for data sharing using the FHIR API.

Specifically, for oncology CodeX developed mCODE, which stands for minimal Common Oncology Data Elements. These elements, Chen said, are “standardized, computable, clinically applicable and available in electronic health records for cancer patients”. With mCODE, a patient searching for a relevant clinical trial has a 91% increase in potential matches located nearby compared to searching prior to mCODE implementation. mCODE and CodeX are also being used to support the White House Cancer Moonshot Initiative, which aims to “end cancer as we know it” by underwriting a large cooperative effort among Federal agencies and outside companies.

On April 18, 2024, HSI wrapped up the series with Don Rucker, who has had a multi-decade career in healthcare. Rucker was the National Coordinator for Health Information Technology (ONC) and led the finalization and approval of the 21st Century Cures Act. In that position, he had primary responsibility to write and persuade stakeholders to support a regulation that would require electronic health records (EHRs) to have an API application programming interface based on FHIR standards, so a patient could download their data from the electronic health records into an app of their choice “without special effort”. Don explained that he met with every stakeholder (about 200 meetings) and gave about 150 national presentations so that by the time the rule came up, “it seemed inevitable”. EHRs have to meet the requirements of the rule and include the standardized core data set in order to be certified by the ONC.   

Rucker explained that the first stakeholder and situation that FHIR considered was how patients could easily move their own data from providers’ IT to an app of their choosing because it had bipartisan support. The agreement made it easier to make these patient data flows a reality. Similarly, Rucker spoke about “prior authorization” as a lever that could be used to make advances in IT interoperability and data flow since it is an issue that upsets just about everyone. He said, “prior auth is the leverage point because in healthcare everyone is in agreement that it’s egregious.”

Throughout the academic year, a number of speakers shared their experience with data interoperability. As a group, the seminars traced the story from the invention of FHIR to its implementation in selected situations. While the rate of change in healthcare can be glacial, FHIR is a very significant step toward the longtime goal of nationwide healthcare data interoperability.