Health data exchanges: We're doing it wrong

While the healthcare industry shifts to a patient-centric framework, the IT sector has notably failed to follow suit.

Patients are increasingly participating in healthcare decisions, and instead of providers treating patients, the two parties are collaborating and breaking the image of the unidirectional provider-patient relationship.

For patients to involve themselves in their health, though, they need the proper tools and information to do so, which the IT sector has not yet delivered.

That doesn't mean that patients aren't demanding it, though, which Ed Park, COO of athenahealth, says is the current trend. "The idea of patient-centered information exchanges is taking root pretty firmly. We're going to see a groundswell of demand from it," he says.

Shifting health information exchanges from a provider-centric model to a patient-centric model is part of the vision of CommonWell Health Alliance, a nonprofit association comprised of IT vendors seeking to ensure health data exchange across the healthcare continuum. athenahealth is a founding member.

In a blog post, CommonWell describes person-centered interoperability as "the frictionless flow of patient information between all systems, regardless of technology or platform. The information follows the person…regardless of where care is delivered, so that the right data is electronically available for the right patient at the right time for the patient's provider or care team."

What's interesting about this definition is the focus on the patient. Interoperability should be, according to the blog post and to Mr. Park, about patient access to information more so than provider access to information.

"There's been an unarticulated demand for patient-centered health information exchange, this idea that I as a patient should be able to go to a lab or go to a primary care doctor [or] a hospital and be able to ask them to share my record and have that be true," Mr. Park says. "If you start asking around, you find that's true essentially nowhere."

Yet, it is a demand to which the industry will have to bolster its supply. For its part, CommonWell offers four key services — patient identification and linking, record locator and retrieval, patient access and privacy management, and trusted data access for systems — to present both the needed provider and patient access to the information. As of April 9, CommonWell was providing its services to more than 60 provider sites, and the alliance expects to deploy its services nationwide to at least 5,000 provider sites by the end of the year. What's more, athenahealth is offering CommonWell services to its entire cloud network of more than 62,000 providers at no additional cost.

"One of the reasons we're seeing such uptick [in interest in CommonWell] is it's a really simple, really powerful idea that meets a need everybody wants," Mr. Park says, a need that patients weren't going to get elsewhere.

He continues, "The goal [of CommonWell] was to create this idea of patient-centered health information because we knew that meaningful use stage 2 wasn't going to do it, so we said, 'What else do we need to have in order to make that happen?'"

The lack of provider-facing interoperability has been largely discussed: there is no economic incentive for providers to share data. If data is freely exchanged, patients don't necessarily have a reason to continue receiving care from a hospital and can seek care elsewhere. The opposite is true for patients, according to Mr. Park.

"I personally would choose health providers based on their ability to be able to download copies of my own health data and put it in a centralized record on behalf of me and my family so I have access to all of it and can make rational health decisions for my family," Mr. Park says. "I think the idea of the HIE as patient-centered is that it is a rational economic act. Provider-centered HIEs are not a rational economic act in all cases."

While there are changes to be made and a new focus to adopt, the industry has undoubtedly made huge strides in just a short period of time in terms of interoperability, advancing health IT and engaging patients as care partners.

"The sorts of things you look at [in terms of sharing data, like CommonWell and the Argonaut Project] may seem trivial, but they wouldn't have been possible a year or two ago, either in terms of willingness or technical capability," Mr. Park says. "We are at a watershed moment for interoperability in healthcare today, driven in part by technical feasibility, driven in part by changing reimbursement models and driven in large parts by patients awakening. It's a really exciting time to be doing all this stuff."

More articles on interoperability:

Should patients pay for access to their medical data? 
Dr. Karen DeSalvo's 3-step plan for interoperability 
Mount Sinai Health chooses InterSystems HealthShare for interoperability 

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