Welcome to the Age of Health Information Sharing

Reframing the dialogue around health information exchange

This article was originally published to LinkedIn.

For anyone involved in health information exchange – networks, health IT vendors, providers, consumers, and others – 2022 was quite a year. Major provisions within the Office of the National Coordinator for Health IT (ONC) Cures Act Final Rule took effect, greatly expanding the types of electronic health data that are subject to information blocking compliance requirements.

For three years, I’ve had the honor of supporting The Sequoia Project's Interoperability Matters cooperative, including the diverse members of its information blocking workgroup. As our group leans into 2023, we anticipate additional rulemaking from ONC and the Office of the Inspector General focused on information blocking and enforcement in the near term. Their continued emphasis on information blocking compliance makes good sense for a regulatory body. To provide clarity on what actors can, shall, and must do, it’s necessary to thoroughly define what they are prohibited from doing.

But because The Sequoia Project is an independent advocate for nationwide information exchange, our role is quite different. To better reflect the questions and perspectives we hear from providers, networks, health IT vendors, and patient advocates, the workgroup is starting the year off by reframing its focus from compliance to culture – that is, from information blocking to information sharing.

From information blocking to information sharing

One of the hallmarks of The Sequoia Project’s charter is that it takes direction from its membership. We focus on the opportunities they believe have the most potential to advance interoperability in service of the health and welfare of all Americans. For the members of what is now our Information Sharing Workgroup, expanding the focus beyond information blocking is a top priority. 

Individually and as a group, they have embraced the idea that health and healthcare are best supported by sharing information, not holding onto data. And while that perspective isn’t universal (yet), the workgroup sees increasing interest from the regulated community in practical guidelines to help them adopt a culture of sharing. That includes the resources developed by our workgroup in 2022.

A running start toward culture change

Fostering culture change is no small undertaking. Success will hinge on having strong reasons to do what it takes and practical guidelines to make information sharing the default.

Fortunately, the health IT and healthcare community has a shared rallying cry: patient health. Every effort actors make to adopt and advance information sharing is a boon for improved patient care. It’s the “why” underlying everything that the U.S. health system is doing to advance interoperability.

Of course, compliance will always be important. Confusion about information blocking rules and exceptions persists – when and how to share, when and why an actor might not share, and other nuances. The efforts and outputs of our Information Sharing Workgroup aim to help clarify those points of confusion, identify where federal guidance is lacking or leads to unintended consequences, and help actors navigate the technology and processes that relieve the burden associated with managing information requests.

As we expand our focus beyond information blocking, we see tremendous potential to build on prior efforts in service of information blocking compliance to give the healthcare field a running start towards creating a culture of sharing.