Value of HIEs in COVID-19 response

“HIEs can aggregate the data, from bringing in the symptoms, the comorbidities reporting – can bring in the test results, the demographic reporting, the normalization of coding – meaning when you’re getting data from disparate sources, HIEs are experienced with technical resources to normalize the data to make sure they make sense,”

Denise Hines, chief Americas officer at HIMSS

In his opening discussion Monday at the ONC Tech Forum, which continues all day Tuesday, Dr. Donald Rucker, National Coordinator for Health IT, began by reminding everyone that the starting gun has been fired on ONC’s 21st Century Cures rules on interoperability and patient access.

They were posted in the Federal Register at the beginning of May, “which is that the form of starting point,” said Rucker, during a wide-ranging conversation with Denise Hines, chief Americas officer at HIMSS (the parent company of Healthcare IT News).

Of course, a lot has changed in the world since the final rules were first published in early March, so ONC added in several instances of “administrative discretion,” he said, “to delay a number of the provisions due to COVID-19. That has obviously impacted things a little bit.”

The pandemic, as has been noted before, has also only highlighted the value of what the new requirements are trying to achieve.

“It’s interesting when you think about it,” said Rucker. “If this rule had come out three or four years ago, and all these APIs were up, our ability to deal with a pandemic would actually be materially different and much better as we look at telehealth and remote [monitoring], and patient engagement, and patient empowerment.”

That’s why three main goals of the Cures Act rules – prevention of information blocking, requirements around APIs and the build-out of the Trusted Exchange Framework and Common Agreement – will still be in effect going forward, even if the compliance timeline has been adjusted somewhat due to COVID-19.

“Patients really have an absolute right to their information and an absolute right to their information electronically, and that that should not be hidden away because of commercial interests,” said Rucker.

While there are still further specifics that need to be ironed out at the federal level – such as enforcement mechanism details from the Office of the Inspector General – I think we’re seeing some very good progress on all of the key parts of the 21st Century Cures.

How will we know when all those rules have proven their worth?

“I think we’ll really know when we have an app economy where apps can actually use a patient’s medical information in a way that is widespread and convenient,” he said. “I think that widespread app use will be the first and foremost proof statement that the intent of Congress and both parties have been met.”

In the meantime, patient experience still leaves much to be desired, of course.

“I think we all know it’s a cumbersome experience,” said Rucker. “It’s cumbersome from the payment point of view. It’s cumbersome from the provision of care point of view. It’s cumbersome from transparency into what’s being done. It’s cumbersome for convenience of things like making appointments. Just every step of the way for most folks. For most folks, most of the time, there’s a lot of stickiness.

“That stickiness reflects manual processes,” he explained. “The beauty of application programming interfaces is that those things can be automated, real-time. So that stickiness goes away. And I think as time happens, it will, at every point of the way, become a much more seamless experience.”

HIEs proving their mettle

While we wait for APIs to be in ubiquitous full-flower across the healthcare ecosystem, “I think there’s a real opportunity,” said Rucker – especially with the nation still in the thick of its complex and fast-changing pandemic response.

“Most of the country is now covered with HIE health information exchanges, and they really are a good way to have central store,” he explained. “Some of them federate the data and the messages out to the various providers as needed, as they’re taking care of patients. And in that world, that can provide one-stop shopping for providers on reporting.

“That one-stop shopping on reporting is, I think, going to be important,” he added. “We have right now, obviously, a lot of different mandated reporting because of the pandemic. But I think over time we can move to that more integrated reporting where then the public health agencies get a feed from the HIEs. We’re not there yet, but I think that’s a big opportunity.”

For instance, he said, “for a lot of questions, the HIEs have longitudinal data. That’s really very powerful to answer a set of clinical questions that goes beyond things like how many tests were done or how many people are in an ICU.

“The longitudinal data can answer questions like, ‘What’s the time course from when somebody turns positive to when the test turns negative? The shape of the curve over the population, from when folks turn positive to they develop immunity? What is the rate of reinfection? What are associated complications?’ I think there are some very powerful things that are possible in this HIE world.”

Hines, who previously served as executive director of the Georgia Health Information Network, agreed.

“HIEs have been involved in providing data during hurricanes and wildfires and natural disasters,” she said. “During this pandemic, we see where the need [is] to exchange test results, and aggregating and reporting those test results, from public health district labs to independent labs and providers – and just ensuring that the care record is available.

“HIEs are able to bring together not only the lab results from these various sources, but also bring in the care records – allowing the epidemiologists to take a look at the full health of the patients, particularly when we need to know about comorbidities,” Hines added.

“HIEs can aggregate the data, from bringing in the symptoms, the comorbidities reporting – can bring in the test results, the demographic reporting, the normalization of coding – meaning when you’re getting data from disparate sources, HIEs are experienced with technical resources to normalize the data to make sure they make sense,” she explained.

“They can also provide resources or even dashboards or access to tools that allow all types of providers to exchange information as needed, at the right time, for the right patient,” said Hines. “We’re now seeing where HIE are creating dashboards that can not only track [the] healthcare facility, but also bed utilization. We’ve see how important that type of information is.

“We’re also seeing where HIEs are asked to provide information to emergency management services, so they can be prepared as they respond through this healthcare crisis with their protective equipment ready to go,” she added. “More information to the right providers at the right time has been the role of HIEs, and we see that role growing in importance.”

Connecting clinical and social determinants

“State and local HIEs, you can sort of think of them as sort of the last mile in terms of connectivity,” said Rucker. “They really go beyond our current EHR-based thinking about connectivity. We see them eventually over time, having a lot of other clinical type resources in the community – things like group homes, shelters, you know, social determinants of health.

“There’s a big opportunity there because that whole world, sort of right at the boundary of clinical medicine, we really don’t have a computerized [record]. When the patients leave that classic clinical network, then they’re sort of lost and then they come back. 

“So I think bringing in the broader behavioral mental health resources is going to be one of the goals here. The other important thing is just they really can take bits and pieces from everywhere.”

For example, he said, “a reference lab may be able to get the lab test for COVID-19, but doesn’t have an EHR, doesn’t have any tools, doesn’t have the workflows to bring in comorbidities or race and ethnicity, those types of things. The HIE, because the records over time can combine all of those in an integrated view, I think is a very powerful part of the infrastructure.”

Going forward, said Rucker, that could pay big dividends for population health, especially during a public health crisis like this one.

“A differentiating factor for the HIEs over what I would call prospective reporting is the HIEs have a complete set of the data, where a lot of reporting is asking specific questions,” he said. “But as our knowledge of this pandemic – or let’s say a new pandemic with a totally different presentation set of symptoms and signs arises – we won’t know what the questions necessarily are to ask ahead of time.

“And because the HIEs have, arguably a complete set of the data,” Rucker explained, “they’re going to be in a position to do, you know, even the symptoms that we didn’t think were important in the past, but now in this new pandemic are – so it gives us a very interesting public health flexibility as well.”

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