After more than a decade of hard work, and not a little frustration at the slow pace of change, interoperability has been making some significant progress recently. And 2021 has been a particularly notable year for U.S. efforts toward more widespread and seamless data flow, says Jay Nakashima, executive director of eHealth Exchange.

The nationwide exchange – it's literally in all 50 states – is a network of networks that links federal agencies and private-sector healthcare organizations for care delivery and public health. In recent times, of course, that's meant, among other imperatives, "sending millions of COVID-19 testing and diagnoses reports to the CDC, and other national and state agencies."

But eHealth Exchange has been making progress on many other fronts toward the wider goals of free-flowing movement of health information across the healthcare ecosystem.

For instance, it's working in tandem with the U.S. Food and Drug Administration to leverage FHIR next year for FDA’s Center for Biologics Evaluation and Research initiative, which gathers patient data for clinical follow-up after adverse events.

In other recent milestones, the eHealth Exchange saw its transaction volume boom – 12 billion transactions annually and counting – as the 21st Century Cures information blocking rule took effect. It plans to apply as a Qualified Health Information Network under ONC's Trusted Exchange Framework and Common Agreement initiative next year.

The COVID-19 public health emergency has been a major wakeup call for the paucity of data exchange, of course. eHealth Exchange has also been working to fix that through its work with the Association of Public Health Laboratories, which has helped enable automatic routing of COVID-19 notifications – which can be tailored for any disease – to public health agencies in all 50 states.

"In the fall of 2020, right in the heart of COVID-19, we really started to see the volume of data exchange skyrocket."

Jay Nakashima, eHealth Exchange

The group has also been focused more recently on data quality. In 2018, it launched an innovative testing initiative to assess the content of the data shared among its network participants. This past year, 98% of those participants managed to pass rigorous quality testing, according to eHealth Exchange.

In a recent interview Healthcare IT News, Nakashima highlighted some of the group's recent success stories – and pledged to build on them with ongoing innovation for the future.

Nakashima says two imperatives helped boost the volume and velocity of data sharing, dating back more than a year ago.

"In the fall of 2020, right in the heart of COVID-19, we really started to see the volume of data exchange skyrocket," said Nakashima. "And I really believe that after speaking with health systems, ambulatory providers and state and regional HIEs and federal agencies that operate in healthcare, that the reason was the [then] upcoming info blocking rule, or the enforcement of it."

More than the minimum necessary

If compliance with the Cures Act has been relatively manageable for most healthcare providers – certainly easier than, say, the bad old days of Stage 2 meaningful use – Nakashima says the success has been constrained, however.

"I should say that we've been seeing the data being exchanged much more when it's requested for treatment purposes," he explained. "We have not seen an increase of data being exchanged when it's requested for payment purposes, or for healthcare operations purposes.

"Sometimes providers and other healthcare actors request data, not because they're a clinician at a bedside, where they need the patient histories," he added. "But sometimes for healthcare operations purposes, someone – more likely in a cubicle – needs data.

ONC's information blocking rule "made it clear that that data needs to be exchanged as long as applicable law is followed," said Nakashima. "But HIPAA is still an applicable law, and HIPAA says that when someone is requesting data for healthcare operations purposes, the responder may only respond with the 'minimum necessary.' And so, because data is currently being exchanged kind of in a self-service environment – automatically, at 3 in the morning, the responding systems don't know what the 'minimum necessary' is."

So, he explained, "a case manager, who's working in the cubicle and calling patients and trying to help them with diabetes or whatever, might say, I need the entire patient history. That's my 'minimum necessary.' But someone else's minimum necessary might just be medications, and it might be even limited to, for example, the statins."

The challenge is that the "responding systems just don't know what the 'minimum necessary' is, and so they respond, very often, with no data. And I'm hoping that that might be something that the Trusted Exchange Framework can help with in the coming years."

Similarly, said Nakashima, "sometimes data is requested for payment purposes, and I think providers are reluctant to provide that in an automated fashion, because the responding providers' system doesn't necessarily know which parts of the patient's history might have been paid for out of pocket."

For example, he said, "if an insurance company is requesting the patient's history, they are entitled to that, typically, if they paid for everything. But if I were to go to Walgreens and not run a script through my insurance and just pay for it out of pocket, cash 100%, then my insurance company wouldn't have a right to see that data."

Many EHRs "don't identify which part of the clinical record was paid for by the patient, and which part of it was paid for by the insurance carrier," he explained. "So the responding systems just aren't responding very often to payment requests for data for payment purposes."

Lab work

Nakashima is proud of some advances made by eHealth Exchange this past year in its collaboration with the Association for Public Health Laboratories.

"When COVID-19 hit in early 2020, we really dropped everything to help the public health agencies better understand where it was spreading. And so we partnered with APHL, and they joined our network as a trusted participant."

Many of the EHRs fairly quickly configured their systems to "automatically report the presence of not only COVID-19, but also another 50-some communicable diseases," he said. "And so, when an EHR notices that a patient has one of these communicable diseases – either due to a lab result or to a medication prescribed or to an exam or assessment – the system automatically generates a report."

This is more than just a lab report confirming a positive test result.

"For COVID-19, the report might be something like, 'Patient is positive for COVID-19. He was stepped up to an ICU. And yes, he was put on a ventilator. And yes, he was prescribed XYZ antiviral medications,'" said Nakashima.

"So the report includes a whole bunch of data beyond the lab result. And so we're pushing these out with the help of APHL to public health agencies, not just the state public health agencies, but also the local ones, county and city."

That's helpful, "especially for health systems that operate in more than one county," he explained. "Because the rules are going to be different: County A might say yes, we want all COVID-19 reports, but County B might say no, just send those directly to the state. APHL helps us by administering rules that identify, for each case report type, where the data should be routed."

Quality improvement

There's been a concerted focus in recent years to improve the quality of healthcare data that's become the lifeblood of care delivery. The most robust interoperability initiatives won't matter for much, after all, if the quality and usefulness of the information that's moving is suboptimal. There's been a lot of work on that front at eHealth Exchange too.

"It's been a long road," said Nakashima. "But by next month, we believe that 98% to 99% of our participants, our members or customers are going to have passed our content quality program. That means the data is going to be much more – or already is – much more interoperable," he said.

"The worst thing you can have is for a public health agency to receive a list of patients that are supposedly COVID-19 positive, but that list arrives and the public health agency tries to upload or consume that data into their system, and their system chokes on it, because the wrong terminology was used. Perhaps instead of using a LOINC code to represent a positive COVID-19 result, a homegrown code was used to describe that test result instead.

"We've required that all of our participants exchange data in the right place in an electronic message and that they include all the required fields and that they use the right terminology: RxNorm codes for medications and LOINC codes for lab results, and SNOMED codes for everything else."