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The HHS Data Liberation Continues—Sort Of

When it comes to the future of American health care, Department of Health and Human Services Secretary Sylvia Mathews Burwell has a massive vision in which entrepreneurs play a pivotal role.

“We are setting a vision to … transform our system into one that works for the American people,” Burwell told attendees at the 2015 Health Datapalooza in Washington this week. “It’s a system that focuses on delivering better care, spends our health care dollars in a smarter way, and puts patients in the center of their care to keep them healthy.”

In order to do that, Burwell pledged, HHS will “continue to liberate data in every way we can.” In addition, she called for entrepreneurs to partner with the government in identifying useful datasets to make available. The Department of Health and Human Services, along with state and local health departments, already has made more than 2,000 datasets available for innovators to use, allowing them to get closer than ever to making empowered-patient healthcare a reality.

Unfortunately, the larger health industry has been less than accommodating. As a result, Burwell’s remarks were less revolutionary than reinforcing, meant to underscore her department’s commitment to ensuring data openness and moving toward interoperability in spite of widespread “data blocking” in the industry. Data blocking occurs when a company’s business practices block health data requests. Even when APIs from data vendors do exist, the lack of interoperability standards makes the work of communicating between systems burdensome.

Interoperability standards would allow systems and devices to exchange and interpret data. According to Healthcare Information and Management Systems Society, widely known as HIMSS, “Interoperability means the ability of health information systems to work together within and across organizational boundaries in order to advance the effective delivery of healthcare for individuals and communities.”

Of course, interoperability standards aren’t just a nice-to-have addition when it comes to health innovation and a system that works in the 21st Century; it’s actually one of HHS’s congressionally mandated responsibilities. Congress mandated in the 2010 American Recovery and Reinvestment Act “that HHS’ Office of the National Coordinator for Health IT establish a ‘governance mechanism’ for a seamless health information exchange system,” Modern Healthcare reports.

What’s to show for that mandate so far? In January, ONC released an interoperability roadmap that defined “how the government in collaboration with the private sector should approach sharing electronic health information.” The roadmap proposed a three-, six- and ten-year timeline for achieving a “nation-wide learning health system” that makes information available to the right people at the right times—whether that’s patients, payers or providers.

In other words, ONC says it can’t implement full industry-wide interoperability for another 10 years—a full 15 years after the congressional mandate was passed.

Earlier this year a HHS spokesperson told HIMSS15 attendees that the majority of comments on the roadmap were “generally supportive of the roadmap.” Now, ONC has published 17 pages of public comments on its roadmap, and it’s clear that the responses range from supportive to highly critical.

For example, Intel Corp. praised the plan’s “emphasis on testing and certification programs,” but also expressed that ONC’s timelines could be more aggressive, helping the industry achieve interoperability standards on a much shorter timeline.

Similarly, HealthIT Now praised ONC’s “ambition,” but stated that the roadmap is too ambiguous to become anything more than “another document in the pile of documents that outlines ambitious goals, but achieves little, due to a lack of focus on attainable outcomes.”

“While we applaud ambition, we question by what levers and through what means ONC proposes to change or align incentives to produce these actions considering the current statutory limits faced by the Agency,” HealthIT Now’s comment states. “We further question whether many of the steps in the Roadmap are desirable, achievable or attainable.”

One potentially unattainable goal is the reduction of the aforementioned data blocking, which would eliminate many barriers for health startups looking to enter the space. Yet, ONC admitted in April that it had few tools to address the problem, as well as limited quantifiable information about the problem. Even if ONC had the tools and policy levers in place, the issue of getting buy-in from the private sector—forcing companies to give up what they perceive to be their competitive edge—would remain.

“If you’re a hospital CEO in the past, you didn’t think about how am I going to make it easier for my customers to go to my competitor,” Craig Brammer, a former ONC official who now works in the private sector, told Modern Healthcare during Datapalooza. “It makes perfect economic sense to be where we are today.”

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Melissa Steffan

Melissa is the former assistant editor for 1776, where she worked on the media team to create compelling, idea-driven content and reporting. A Seattle native, she graduated from Seattle Pacific…