In a recent webinar hosted by the Center for Connected Medicine, Cox and other industry experts discussed the changing landscape of health care data.

To illustrate how the health care industry got into its current quagmire, the presenters pointed to the evolution of standards in other industries. Some, like the aircraft manufacturing sector, were set by the government when the industry failed to reach a consensus itself. Others, like the telecommunications industry, have been more successful in agreeing to set of standards. "If you think about the mobile network that has been built, it has many different operators, but you can take your smartphone virtually anywhere and get the access you want," said Steve Vogelsang, chief technology officer, IP and optical networks at Nokia.

That's the ultimate goal for health care data, but organizing and reaching a consensus on the best way to build such a network isn't easy, Cox admitted. "We're still not moving fast enough. The self-organizing principle is not as easy as you'd like it to be."

The Centers for Medicare and Medicaid Services have, over the past few years, implemented several initiatives intended to make data more accessible. These initiatives have served as something of a wakeup call for the industry: if the various entities can't find their own solution to interoperability, the government will enforce their own.

Aneesh Chopra, president of CareJourney, served as the United State's first chief technology officer under the Obama administration. Chopra says that during his time in office, the CMS established a minimum standard for electronic health record interoperability, with the expectation that the industry would expand upon it over time. Unfortunately, it didn't. "The failure of our industry, in nine years, to add even a single element on the menu of items to be shared is atrocious path that we have to move from."

"We do not want the gov to tell us which standards to use," remarked Kristian Feterik, eRecord medical director of interoperability at UPMC. " At the same time, we could use some facilitation where the crucial companies can come together and figure out what works and how to exchange data meaningfully."

Competing standards, competing interests

Why are health entities so reluctant to open up their data? One reason is the monetary investment required to harvest and store it. "We have two camps," Feterik said. "One believes the information belongs to the patient–all that is written down in the patient's chart should be available at no cost.

"On the other hand, you have people who would say there's a cost to storage and there should be a fee associated with it," he added, noting, however, that the cost of storage is decreasing and exchange technologies are improving every day. "We have the opportunity to right this tide, where more companies and individuals are going to disrupt and find new ways to connect in more efficient ways."

Chopra compared the current situation to the BetaMax/VHS fight of the 1970's and '80's. Without consensus on what format to use, no real progress can be made. "If you accept the premise that the consumer has a right to the data and it's theirs, the power of the singular statement about the patient is that it gives an obvious roadmap for the engineering standards that gets a vision of everything in the EHR accessible in machine-readable format."

Once everyone in the industry agrees on those big-picture aspects, they can begin working on putting them into practice. "Getting devices connected is really the first challenge," Vogelsang said. "We want to not only connect your personal devices but also more industrial devices–mobile labs, imaging machines, etc.–and have a secure, robust connection back into the network to collect the data and move it where it needs to go."

Some in the industry advocate for an intermediary, or health information exchange, a third-party entity that can facilitate the transmission of data between other entities. And while there's general consensus that data should be free for the patient to access, bulk exchange between entities could be a little more cost-sensitive.

There are a lot of technical aspects that go into how a health entity's data is collected, stored and shared, resulting in various sets of standards and protocols. FHIR (Fast Healthcare Interoperability Resources) is a leading draft standard for data exchange infrastructure. But even within FHIR, there are compatibility issues. Apple Health Kit, for example, was designed with an older version of FHIR. "It's an older version than what CMS is requiring," Cox said. "Even for people like us who are ready to jump in, it's hard to backwards integrate."

What's at stake?

There are obvious and not-so-obvious benefits of health data interoperability. Among the obvious is increased efficiency, decreased costs, increased collaboration between providers and greater control for patients. "Elimination of things like prior authorizations and making sure we're getting you faster payments," Cox noted. "There are so many things we can do to take friction out of the system and move the data as fast as we possibly can for that member."

Those in the industry also see even bigger possibilities. Connecting with patients via phone app and home monitoring to prevent problems before they become costly. "Our way to advance is acute care, between visits–how can we help patients who may have chronic illness and use that knowledge, at a later stage, to influence those in whom we want to prevent illness?"

Digital health advisors, for example, could bring greater equality and access to services. "If we can enable decision support, there could be an empowering philosophy here, that no matter who you are or how much money, you should have the same high-quality advice about how to access the health care system," Chopra said.

"We can only do better," added Vogelsang. "In so many industries, we've begun to apply AI and machine learning. If you can harness the data, you can suddenly start doing amazing things. Think of how much better we can be at diagnosing early stage diseases."

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