‘Freeing’ Data May Be Tricky in California

Mark Smith is a believer. The president and CEO of the California HealthCare Foundation launched a recent forum in Sacramento on the national “Free the Data” movement with an unusual comparison he called the “Harrah’s analogy.”

Casinos, he said, hold one of the keys to health care reform.

“It turns out that when you get what they call a loyalty card [from a casino] to buy those chips, the main reason they do that is to acquire data so they can not only predict your behavior but alter it,” Smith said.

A casino doesn’t necessarily want a first-time customer to lose money right away, he said, because that customer becomes unhappy and won’t come back. “So if you’re a first-time customer and you’re down 150 bucks, someone in the casino will slide up to you and ask you how you’re doing,” Smith said. “And maybe get you a comp meal or a drink.” The casino intervenes before customers reach the decision point to leave.

“Which just goes to show,” Smith said, “that the people who run casinos are much smarter than the people who do health care.”

Health care could benefit from similar customer-focused systems. The key to those systems, Smith said, is the free flow of information.

“The whole notion that by combining real-time access to data, they can not only know what you will do, but it could be designed and executed in a way that could alter the future. That’s something that the casinos and retailers now take for granted as part of doing business … and we’re 10, 15 years behind them.”

Smith’s remarks came during a recent forum that aimed to explore the value of making public health care data more easily available. One of the event co-sponsors was CHCF, which publishes California Healthline.

According to Smith and others at the forum, one of the first big steps toward shoring up the information technology gap might be to take the federal effort down to the state level — and spread data, for free, across California.

‘Data Revolution’

Todd Park, chief technology officer at HHS, calls himself the “entrepreneur-in-residence.” He said he’s more interested in getting other people’s projects going, rather than just directing department efforts.

“Most of the smart people in the world don’t work for you,” Park said. “We want to make health care data available to other smart people in the world, and it accomplishes our mission in a way we never could have imagined. It’s sort of a data revolution. And it dwarfs what we could do by ourselves.”

The idea is simple, he said. There is a vast stream of public information — not private patient information, he was careful to say — that could contribute to improving public health efforts across the country. The only limiting factor to access, he said, often is how the data are formatted. Park’s department has been busy converting public health information from PDFs into XML feeds or Excel spreadsheets.

The model of information distribution, Park said, is the National Oceanic and Atmospheric Administration, which runs the National Weather Service.

“It collects virtually all weather data, and it not only collected it, but also distributed it for free. And it led to a whole set of innovations,” Park said. “Weather apps, weather insurance, the Weather Channel. It’s a great example of how open data leads to innovation that NOAA by itself couldn’t do.”

The first release of federal data came with GPS — global positioning system — data during the Reagan administration. “So this is our third effort to run this play,” Park said. “We’re actually liberating billions of data from HHS, and putting it out in the public domain. The objective is to catalyze an ecosystem of innovation.”

The conversion of all of those documents to machine-readable files is actually not so difficult, Park said. About 90% of his department’s work on this project is spent to make sure innovators know the data are available.

Park offered examples of how innovators might transform health data into practical applications.

“Like for instance, there are 1,100 different metrics of obesity rates, so you can use that information to develop a program to create community access to healthy food,” he said.

Ozioma is one example of an app that turned that information into “a virtual health research department, an Apple Genius bar but for health,” Park said. Some pharmacies use the app to help people narrow down their medical information searches.

“And Bing [Microsoft’s search engine] has ingested Hospital Compare data,” he said, “so when you search for provider information, it pulls up patient satisfaction information and a comparison to the state average, and it pushes all of that to you in the moment it was the most useful.”

Freeing Data in California

What is happening on the federal level also could occur at state agencies, Park said.

“More and more states are getting interested in this. A lot of the most exciting data is with state agencies,” Park said. “So it’s not an HHS initiative anymore, it’s an American initiative.”

Panelist Toby Ewing, a consultant with the state Senate Governance and Finance Committee, said there are clearly huge potential benefits to free-flowing data, but California’s Department of Health Care Services is a different animal from the federal HHS. This state has a few different stripes, Ewing said.

For instance, privacy rules in California are different, Ewing said. “Now, most of those rules we make, many of them we made a long time ago, so we need to figure out what’s possible now with our technological advances. How do we make sure we can release the data?”

Park said he ran into similar concerns on the federal level, and that’s why he advises staying far away from personal health information.

“I would proceed cautiously on that front, because we’ve been doing nothing that comes even remotely close to privacy,” Park said. “One thing that might work in that case, though, is people having their own personal data, then they don’t get angry about sharing it, if they’re the ones sharing it.”

Andy Krackov of the Lucile Packard Foundation for Children’s Health said if the federal government can be successful releasing already public information, California can do it, too.

As a tech leader, it’s unusual for California to be following behind federal efforts, he said. However, Krackov noted, “There may be policies at the state level that might keep us from talking to each other.”

According to Park, the benefits are so potentially great that state agencies should at least try. “It’s a hot, cool thing, leveraging the power of data,” Park said. “We will invent our way out of health care issues and problems.”

Park made one final analogy to sum up the importance of full flow of data in real time. “It’s like looking at a speedometer on the highway, and it tells you how fast someone else traveled on this road three years ago,” he said.

“That just doesn’t work. You can send preliminary data, the initial claims, and not final resolution claims. We have to move in that direction. Otherwise, we will be getting that three-year-old speedometer info, and it’s just not useful to us.”

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