Patient Need-to-Knows: ABCs of HIEs

Patient Need-to-Knows: ABCs of HIEs

If only there was a central repository of information that patients could access in their time of need….no, I’m not talking about the patient portal.

While a comprehensive, longitudinal medical record is still only a thing of day dreams, health information exchanges (HIEs) may be a close second. Here’s a bit more on HIEs from HealthIT.gov.

This episode of Patient Need-to-Knows is all about these seemingly underground pipelines of patient data that exist across the nation that patients have NOT had access to. (Crazy, right?!) As a patient advocate, when I first learned about HIEs years ago, I was super excited, thinking this is a great resource for patients, especially the patients with the most complex medical situations where there were lots of medical records spread out everywhere. You can image my frustrations when I reached out to HIEs locally and found out THEY WEREN’T BUILT FOR PATIENTS TO ACCESS THEM. This was an incredible disappointment as patients really could benefit from access to HIEs.

I’m excited to introduce two incredible women and colleagues who are powerhouses in all things patient data access and leaders in the HIE space and are looking to change the future for HIEs.

Lisa Bari is the Chief Executive Officer at Civitas Networks for Health. Lisa previously served as the CEO of the Strategic Health Information Exchange Collaborative and as the Health IT and Interoperability lead at the Centers for Medicare & Medicaid Services’ (CMS) Innovation Center, where she led health IT policy for the Comprehensive Primary Care Plus model and helped author the CMS Interoperability and Patient Access rule.

Deven McGraw is a national expert on health data policy. She currently lead of data stewardship and data sharing at Invitae, a genomic medicine company that provides clinical genetic testing and helps patients gather their records for use in seeking care and advancing research. Previously, she was deputy director of health information privacy at the Office for Civil Rights and acting chief privacy officer at the Office of the National Coordinator of Health Information Technology when the Cures Act first passed.

Listen in here as we dig into:

  • why each of these fierce leaders does what they do at the intersection of health information, policy, & patient access?

  • what the heck are HIEs, what are they used for, and why don’t patients know about them?

  • the scoop on what Lisa and Deven are working on in the HIE world, including the Patient Centered Data Home and Cures Gateway

  • Lisa and Deven’s predictions about what role HIEs will play in the future of patient access and patient care.


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