Carequality 2.0

The biggest health information exchange (ahem... framework) in the country, serving billions of transactions of medical records, just updated its policy framework in what it’s calling “version 2.0.” In this post, we’ll examine the changes and what they mean for interoperability.

Some background before we dig in…

Many of us participated in working groups for years to develop new policy, technology standards and basic governance around methods to make interoperability better than it is today. These efforts focused on several key issues that hampered certain stakeholders’s ability to get data via Carequality. These stakeholders were predominantly payors, pharma and patients, but also included organizations that ‘redundantly’ connect to EHRs (we call these “On Behalf Of” organizations - more on this later).  

Working groups met weekly for several years to diagnose issues and solve them so that, for example, patients could get access to their medical records via national networks. Among the major issues targeted were: 

  • Patient Matching - how do we ensure queries are returning the right records? 
  • Individual Access Services - how do we trust individuals to access their own records?
  • Operations - Care Coordination - how do we trust payers to use data to coordinate care?
  • “On Behalf Of” Organizations - how do we connect solutions (like apps or tools) that sit on top of EMRs already connected to Carequality (interop inception)? 

Fast forward to today…

Note the curiously coincidental timing of the newly announced policy update: the 21st Century Cures Act recently published its Final Rule via the Office of Inspector General website stating that as of Sept 1, 2023, organizations will be liable up to $1 million for information blocking.  And…on Aug 1, 2023, Carequality publishes its updated Policy 2.0 Framework.  

Well, the Particle team has combed through it all and we have some thoughts. Three main changes or updates have been established:  

1. On Behalf Of (“OBO”) queries are now live. 

This is a big win for organizations that connect to providers that use EMRs already connected to Carequality.  It used to be that they’d have to turn off their EMR-Carequality connection before turning on their other connection since an organization can only have one entry in the network… We had to deal with this a lot.  Now, organizations don’t need to respond to incoming requests if they’re already connected to an EMR on Carequality.  Makes sense. Nice update.  

It does leave issues for orgs that participate across networks.  If an “OBO” org does not create net new data and turns on Carequality, but also connects to CommonWell… What do they do?

2. Operations - Care Coordination. 

The Carequality Steering Committee has elected to keep this optional by using the word SHOULD as opposed to MUST in the policy document.  This means network participants do not need to share data with covered entity non-providers (e.g. payers) trying to coordinate care for patients.  But what is ‘care coordination’, anyway?  Let’s look at the wording:

An Implementer or CC that initiates queries for the Permitted Purpose of Care Coordination, a subcategory of Health Care Operations as defined in 45 C.F.R. Part 164, Subpart E, may only do so if their query is a request for data initiated by a non-provider Covered Entity or BA to determine how to deliver care for a particular patient, group, or community by performing one or more actions in order to organize the provision and case management of an individual’s healthcare, including:  

  • Monitoring a patient's goals needs, and preferences
  • Acting as the communication link between two or more parties (e.g. providers or case management companies) concerned with a patient's health and wellness
  • Organizing and facilitating care activities and promoting self-management by advocating for, empowering, and educating a patient
  • And ensuring safe, appropriate, non-duplicative, and effective integrated care

Carequality has decided that covered entities like payers, plans, and care coordination organizations do not get guaranteed access to data for things like ensuring safe, appropriate, non-duplicative and effective integrated care. Hopefully this changes in the future, but we are not seeing a strong stance in this update. 

3. Individual Access Services.

This has been hotly debated for many, many years now.  We all (except almost every provider) know the 21st Century Cures Act is now enforceable (and fines start in one month) so we’d logically think… well, if a patient requests their records from an EMR via Carequality… don’t they have the law on their side now? Carequality is choosing to stay out of that debate by saying, “we strongly encourage you to respond to a patient asking for their own record, but we won’t get in your way if you decide not to honor that request for data.”

This comes with the caveat that if you choose not to respond to a patient request, you may be liable for information blocking (incurring a $1-million fine). The Steering Committee is choosing to use the word “SHOULD” as opposed to “MUST,” which means an organization is not out of compliance at the Carequality level of policy should they choose not to respond to a patient's request for their own record.

So where does that leave us?  

To put this in perspective, Treatment, the only PoU with a “MUST,” garners about a 90% success rate across the US in finding patient records because every endpoint must respond when queried.

Today, the “Operations - Coordination” PoU, which has a “MAY” and now a “SHOULD,” has about a 3% response rate. 

“SHOULD” is optional and these rules tend to work like “1s” and “0s,” so we expect to see response rates for SHOULD PoUs in the 0-5% range going forward.

While it is disappointing that the Carequality Steering Committee has not elected to align its participants with Info Blocking rules and respond to patients asking for their own data or to covered entities attempting to coordinate care across providers, we will continue to advocate on behalf of the millions of Americans frustrated by the lack of access, transparency and flexibility in the US health system.

About 10 years ago, I saw Joe Biden speak at JPMorgan about how his son Beau, who was being treated for brain cancer, could not access and transport his own medical records. We’re still living in that reality today.  Joe… hit me up.  Let’s talk.