Health data sharing still faces hurdles both technical and political

By Jonah Comstock
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HealthVault Windows8At Health 2.0's HxRefactored event in Brooklyn, New York this week, a number of big names spoke frankly about the challenges of providing patients with their healthcare data. Participants described both technical challenges and larger policy issues with the sharing of healthcare data.

Sean Nolan, head of the Microsoft HealthVault team, said that there are two truisms about healthcare data: Healthcare apps need real data to work, and "healthcare data sucks."

"We can’t measure it well, it’s hard to capture, and the places it does exist are so variable it can drive you crazy," he said in a keynote last night.

Nolan shared a number of examples of health data foibles he's encountered at HealthVault. For instance, weight scale data naturally fluctuates a few pounds day to day, so tracking it too granularly can be misleading and counterproductive to weight loss. Nutrition tracking can be helpful for people to change their behaviors, but nutrition is complicated, and asking people to fill in a large number of data fields about what they eat can turn them off tracking all together.

The data in EHRs is also plagued with problems that stem from how it was originally collected -- unstructured dates in a patient's record, for an immunization, for instance, might read "during childhood" or "one year ago," a date which isn't much use out of the context from when it was jotted down. Early on HealthVault had a problem interpreting whether no entry in the "allergies" field meant the patient had no allergies, or the doctor never asked. When new data protocols fixed the problem. it created a new one, as some patients began seeing a mysterious new allergy appear in their records -- they were marked as "allergic to none."

Nolan offered three pieces of advice for dealing with healthcare data: understand the context of data, design your system with a plan in mind for when it comes up with insufficient or unparseable data, and be aware of the work others are doing that you could benefit from. Here Nolan was alluding particularly to the ONC's Blue Button program.

In another panel at the event, Thomas Black a Presidential Innovation Fellow working at the Department of Veteran's Affairs spoke about Blue Button, along with Fred Trotter, healthcare data guru and CEO of Not Only Development and Dan Conroy, Head of Business Development at Aetna Carepass.

The panel generally agreed that barriers to healthcare data availability were often more political than technical.

"There’s good dollar reasons to not share patient data, because with patient data liquidity, you have patient mobility," Trotter said. "Part of the reason patients are loyal to doctors is that they have their data. Part of the reason patients are loyal to insurance companies, is their insurance company has their data and understands their problems. Not having patient data move in many cases means not having patients move and there are some people for whom that’s in their interest."

Trotter said that in an ideal world of data sharing, "EHRs would be like operating systems." Black pointed out that the VA's in-house EHR is very much like an operating system, partly because it was developed so long ago. The VA shares data via Blue Button to its myHealthyBeds patient portal, and has been working on a longterm mobile app initiative. Black believes the VA is well positioned to get around misaligned incentives.

"It’s hard to scale outside of government, but the VA is investing in EMR really just being that data repository," he said. "... These changes are happening, and government is leading because we can play by our own rules and we’re not driven by profit. Hopefully we can be the leader as this comes together."

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