The Immunization Registry Problem

You want to talk about vaccines?! In this economy?

As we sit in the liminal period before the first ruling of what is or isn’t a health information network, I would like to humbly petition the interoperability gods for one entity type that should be a health information network: state immunization registries.

It’s been a hot minute since we last talked about Immunization Information Systems (IIS) in Gearing up for Immunizations (For some reason, vaccine commentary went out of vogue since 2020. Really not sure why).

From that piece:

Immunization information systems (IIS) have received special focus as part of government health initiatives (Meaningful Use 1 and 2), so every state has one or more.

…

Population-based registries were the answer. By aggregating regional data, these repositories help to raise immunization levels with child-specific reminders to providers as they see patients and to parents of children behind in immunizations.

These are state-run systems that collect and consolidate vaccination records from providers across a jurisdiction, serve up immunization histories on query, and generate forecasts for what's due next. They've been around for decades, were turbocharged by Meaningful Use funding and EHR certification requirements, and by MU Stage 3 had standardized on content (HL7v2.5.1) and transport (a CDC-defined WSDL) for bidirectional query.

Look, I know vaccines are perhaps a hot button topic, to say the least, but there are very practical, hopefully non-contentious reasons that patient access should be ubiquitously available across jurisdictions:

• Parents need immunization records for school and daycare enrollment, and right now that often means calling a pediatrician’s office or navigating a state portal that may not exist

• Adults need them for travel (yellow fever, COVID requirements depending on destination), employment in healthcare settings, or college enrollment

The IIS is the only source with the complete picture. Your pediatrician has what they administered, the pharmacy has what they gave you, but only the IIS has all of it.

Immunization Gateway

When I wrote the article, the IZ Gateway project aimed to stitch the 64 registries together for cross-jurisdictional exchange, consolidated reporting, and consumer access. Since then, it’s been shovel passed from the HHS’ CTO to the CDC, which now sponsors and contracts for the program directly.

So what’s changed? We saw four pillars originally in the IZ Gateway portfolio:

• Connect (provider-to-IIS reporting)

• Share (IIS-to-IIS exchange)

• Reporting (consolidated data to CDC)

• Access (consumer-facing)

Those all still exist, albeit with some renaming. Moreover, the first three have seen real traction. Today, per Association of State and Territorial Health Officials (there’s a subtle joy to finding a new industry organization):

• 57 jurisdictions have signed interjurisdictional exchange MOUs

• 44 are doing live IIS-to-IIS data exchange through the Gateway

• 361 peer connections are operational.

Not bad for a project that was onboarding its first 35 independent pharmacies in Minnesota when I wrote about it in 2020!

But consumer access (the part where you can pull your vaccination records) remains the forgotten youngest child. It was in the original 2019 HHS-CTO deck:

It’s still on the CDC’s IZ Gateway page. And yet, five years and a global vaccination campaign later, there’s no widely available consumer-facing capability pulling from IISes nationwide. Today, only about half of the United States has direct consumer access to their immunization record in the IIS. The priority just wasn’t there under the Biden admin and now, even as patient access to data is a key prerogative under the Trump admin, I can’t imagine anything vaccination related will be pushed.

HTI-2’s Big Swing