Establishing a network of networks across the country is a tremendous opportunity and one that should connect and expand upon the infrastructure that has been built already in some states and nationally. For more than two decades, the federal government, states, non-profit organizations, providers, health plans and health information technology organizations have helped transform a system that was largely reliant on sharing paper-based records into one where the electronic exchange of health records and patient data is now commonplace and expected.
With the development of a Trusted Exchange Framework and Common Agreement (TEFCA), the federal government is pursuing ambitious health information exchange at the national level. If effective, this commendable effort could significantly improve the healthcare of individuals and communities. But if the national framework is not implemented thoughtfully, it could uproot and upend existing successful health information exchanges (HIEs) and networks (HINs) – counter to Congress’ intent of the 21st Century Cures Act.
Our Statewide Health Information Network for New York (SHIN-NY) was created to solve the same issues the federal government now seeks to solve on a nationwide scale with TEFCA. Since it launched more than a decade ago, the New York eHealth Collaborative (NYeC)—the entity charged with overseeing and advancing the SHIN-NY—has been dedicated to improving healthcare through the health information exchange. Together with our local HIE partners, we have worked on issues around interoperability and evolving technologies to patient consent and provider education.
With a statewide governance structure that largely resembles TEFCA, we believe that the Office of the National Coordinator (ONC) for Health Information Technology can learn from our experience. Under TEFCA, the Recognized Coordinating Entity (RCE) would play a role similar to NYeC. It will be imperative to ensure the ONC’s selected entity is unbiased and more of the technical details are delegated to encourage nimbleness and collaboration.
Today, the SHIN-NY and other HINs work diligently to address the challenges of interoperability between stakeholders. As proposed, TEFCA participation is voluntary and in states like New York, with robust HIEs where most providers already participate in a state exchange, the value in participation in a national network needs to be stronger. ONC should adopt an appropriate exception and safe harbor under the recently proposed information blocking rule to draw participation and help ease the burden of complying with its complicated list of exceptions.
A successful nationwide exchange must address the varying consent policies across states. There are opt-out, opt-in, and combinations of consent approaches among the states that can stifle sharing important clinical data across state lines. TEFCA proposes use of a “meaningful choice” for national consent policy but this does not reconcile fundamental policy differences across states.
Our local HIE partners can attest that negotiating new participation agreements is complex and time consuming. Additionally, lack of consistency between pending regulations and program requirements can result in confusion. Seamless implementation will require more time and better program alignment.
The ONC deserves credit for tackling this complicated ecosystem—creating tremendous potential to improve patient outcomes and reduce healthcare costs. The rewards and impacts could be monumental, so let’s make sure we get it right.
Valerie Grey is the Executive Director for the New York eHealth Collaborative, a non-profit organization working to improve healthcare by integrating health information exchange across the state.
