Remembering That Interoperability Policy Is Still Personal
This has been another important year in the work of building health data networks in the U.S. as the urgency of the pandemic has carried us more swiftly to the final miles of interoperability. Medicaid transformation efforts that rely on the exchange and aggregation of accurate, timely health data are being implemented in numerous states. The Office of the National Coordinator for Health Information Technology (ONC) launched the Trusted Exchange Framework, Common Agreement (TEFCA.) And health information exchanges (HIEs) across the country are increasingly serving as health data utilities — collecting, refining, and delivering crucial public health data, including nuanced racial demographics, language, sexual orientation, and gender identity data, needed to make real gains in health equity.
Here in California, our nonprofit health information organizations are especially important to those working to eliminate health disparities and close the digital divide — both for individuals and for the small, rural, and Medi-Cal providers who don’t have the technology or resources to share quality data. For example, the department of public health in San Bernardino County, the largest geographic county in the nation, is making significant progress in reducing the rates of congenital syphilis (skyrocketing in California and elsewhere) by using HIE data provided by Manifest MedEx to alert and connect public health nurses to pregnant patients with syphilis when they are admitted to hospitals so they can provide testing and treatment to prevent terrible, and sometimes fatal, outcomes for their babies. These low-cost, high-impact public health moments, driven by timely and accurate data, are exactly where our healthcare future should be headed.
As we work to advance interoperability and data sharing across California and the nation more broadly, we should remember that our ultimate goal is to help people like these pregnant patients and their babies live healthier lives. We are all patients — and we are all caregivers — whether we are physicians or nurses, parents, or have aging parents or relatives. We all have skin in this game, and we should be advocating for interoperability that serves both “the patient” — and ALL patients.
An executive from a prominent digital health company and longtime patient advocate, Erin Moore, recently reminded us of this goal when she shared her powerful story with a group of health data and policy leaders.
In addition to being a health technology insider, Erin advocates for her young son who lives with cystic fibrosis. She has manually collected data on her son’s health and treatments since he was a baby, which at first included filling in spreadsheets on her home computer. Erin spoke to how difficult it is, still to this day, to get access to her child’s complete health record. She also powerfully reminded us of what a missed opportunity this is, wishing she could help with correcting inaccurate information in provider systems and help clinicians collaborate, saying, “I think patients are the most underutilized resource in healthcare.” We can’t lose sight of who all of this work is for — the patient.
I hope this real data liberation day is the moment, together with patients and in line with years of work on health technology, policy, and reimbursement change, where we truly shift our healthcare system by funding and supporting nonprofit health data utilities designed and built to serve the people.
As a parent, and as someone who has worked in California and nationally for decades trying to unlock the flow of health data to support communities, hospitals, and health systems, I can tell you that securely sharing timely and accurate health information can do real good in the lives of millions of people. That’s something that we need to keep in focus as we build our health data ecosystem of the future, and I’m excited to see all our work turning into real transformation.
Erica Galvez is CEO of Manifest MedEx, California’s leading nonprofit health data network. Before joining MX, Galvez led the HIE efforts at Aledade and also led the Office of the National Coordinator for Health IT’s (ONC’s) Interoperability Portfolio.
