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Celebrating Health Data Access

October 6, 2022 was a major milestone for making health information more accessible. Key information blocking provisions from the 21st Century Cures Act went into effect that prevent health care entities (i.e., providers, health IT developers, and health information exchanges) from blocking access, exchange, or use of health information. For several months, individuals have already been able to access many parts of their electronic health information as defined by a set of common data elements in the U.S. Core Data for Interoperability (USCDI). With these new provisions, the definition of electronic health information has now expanded to encompass ALL electronic protected health information under the Health Insurance Portability and Accountability Act (HIPAA). This includes clinical notes, images, and other information beyond the USCDI version 1 core data elements. While HIPAA set the stage for information sharing back in 1996, patients requesting data should now no longer encounter delays or fees. Patients must also receive their health information through modern electronic systems, such as Application Programming Interfaces (APIs), according to the new requirements.

This new phase of health data liberation will help patients be more informed about their care and reduce the heavy burden to manually piece together paper records. It also provides new opportunities for care teams to longitudinally monitor progress and inform care decisions. Much progress in health information sharing has been accelerated by Health Level Seven’s Fast Healthcare Interoperability Resources (FHIR) standard, which enables interoperability between systems, such as between electronic health records and apps. This allows patients to be the stewards of their own health records with existing consumer apps such as Apple Health Records or Android CommonHealth that use the FHIR standard. Having a FHIR API is also a federal requirement for electronic health record certification as part of the 21st Century Cures Act.

We are at a pivotal point in health care history where individuals can now obtain all of their electronic health information (with a few exceptions). The next phase involves equipping individuals with additional tools that allow them to harmonize and organize their data across different health systems and data sources (sensors, apps, medical devices). These tools should enable individuals to derive insights from, curate, and share meaningful parts of their unique health journey with care teams and/or researchers. This is the future that we are working towards with CardinalKit!