AMIA’s Doug Fridsma: Time for the Feds to Truly Open Up Patient Records to Fully Interoperable Data Use

Doug Fridsma, M.D., Ph.D., president and CEO of the American Medical Informatics Association (AMIA), continues to be a voice for progress and change in clinical informatics, healthcare IT, and the U.S. healthcare system. Most recently, during comments delivered at the 2016 ONC [Office of the National Coordinator for Health IT] Annual Meeting, Dr. Fridsma called on public and private stakeholders to provide patients with total access to their complete electronic health data. Just prior to his participation at the ONC Annual Meeting on Thursday, June 2, AMIA released the following statement, to be attributed to Fridsma:

Doug Fridsma, M.D., Ph.D.“Access to information and the ability to integrate and use information has changed how individuals book travel, find information about prices and products, and compare and review services. Information can empower individuals, but health care has lagged behind other fields. It is unconscionable that in 2016 most patients are unable to obtain their entire medical record unless they print it out. While progress has been made in the last several years to support patients’ access to their information through various electronic means, such as Blue Button and patient portals, this is not sufficient to make patients first-order participants in their care, their health and their research efforts. Patients deserve nothing less than total access to their complete electronic health data.

Modifications to HIPAA [the Health Insurance Portability and Accountability Act of 1996] through HITECH [the Health Information Technology for Economic and Clinical Health Act of 2009] set the foundational expectation that patients have a right to an electronic copy of their health information. Guidance from OCR [the Office of Civil Rights] clarifying this right in terms of form, format and manner of access is another important step forward. Yet, the operationalization of these policies has only rendered slivers of information available for patients to use as they see fit. Patients have a right to all of their health information, not just what CMS [the federal Centers for Medicare & Medicaid Services] defines through meaningful use, or what ONC’s certification program deems necessary to meet CMS’s definition...