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Data blocking: When health information exchanges don't live up to their name

Data blocking and health information exchanges shouldn't go together. But some HIEs are turning into siloes of data, two experts who discuss the problem say.

Laura Adams walks the floor after participating in a panel about interoperability at the HIT Summit in Boston....

As she strolls around, many people want to speak with her.

She was dynamite during the panel as she shared her firsthand experiences with data blocking as the president and CEO of the Rhode Island Quality Institute, a nonprofit that in partnership with the Rhode Island Department of Health developed a statewide HIE called CurrentCare. Certain healthcare organizations in Rhode Island that are using a particular electronic health record (EHR) vendor, she said, couldn't share data with the statewide HIE due to exorbitant data sharing fees.

But vendors are not the only ones guilty of data blocking. Some HIEs may be guilty, too.

When one thinks of HIEs, data blocking is not the first thing that comes to mind. In fact, HIEs are thought to promote and enable interoperability. It is described in the name, after all -- an exchange of information.

Laura Adams, president and CEO, Rhode Island Quality InstituteLaura Adams

One CIO even told me he believed that HIEs could be a solution to create interoperability by acting as the central plumbing for data to travel around. Maybe HIEs were originally intended for that purpose, but in some cases, things did not turn out that way. Sometimes, HIEs will not share data with each other, either. And, often, states have more than one HIE.

Learning that data blocking is happening among HIEs comes as a disappointing surprise. And Adams isn't the only person who has mentioned this problem.

But if their real goal is true health information exchange, that's not always happening with health information exchanges, and I think that's really unfortunate.
Laura Youngexecutive director of the Behavioral Health Information Network of Arizona

One CIO told me recently about how two HIEs in Missouri are sharing data with each other, and one is not. And Laura Young, executive director of the Behavioral Health Information Network of Arizona, said she has observed this happening with other HIEs in the United States as well.

"I think health information exchanges are very guilty of [data blocking], too," Young said during the same panel that Adams participated in at the HIT Summit. Young explained that in some cases data blocking among HIEs is due to lack of education on how to use an HIE. But she added that HIEs aren't always motivated to educate people how to use the HIE, either.

"[HIEs are] getting paid however they're getting paid, through subscriptions or whatever, and they're happy, and they've got a big giant database that they can do some analytics and some other things on," Young said. "But if their real goal is true health information exchange, that's not always happening with health information exchanges, and I think that's really unfortunate."

How and why HIEs became siloes of data

Young understands why HIEs are separating data and inviting data blocking.

Young explained that, for HIEs, funding and a stringent timeline to get up and running rushed people to create HIEs without thinking about the long view.

Laura Young, executive director, Behavioral Health Information Network of ArizonaLaura Young

"A few years back there was ... a lot of funding for HIEs to get rooted. So a lot of states in the region applied to funding to start HIEs," she said.

This led to HIEs focusing on hooking up big hospital systems and getting paid, but ultimately caused them to neglect thinking about how they would share data back with healthcare organizations, she said.

"I think [data blocking] was just a byproduct of the timeline and the way the grants came out," Young added.

What can be done from here

Finding a solution to data blocking among HIEs won't be easy, and Adams believes that alternative payment models will not help.

"As soon as [accountable care organizations] were announced, people started circling wagons saying, 'We're forming one, we're forming one. And, by the way, there's going to be a moat around our data, and you're not getting it,'" Adams said. "We missed the point."

Young thinks fostering collaboration would also help, although she recognizes that this step would be unlikely to happen on its own. Therefore, some regulatory assistance would be helpful, she said.

"There's such a sad irony to the idea that once you get your region's data that you would somehow say, 'But now that rationale's turned on its, ear and I don't intend on sharing data with you,'" Adams said.

Adams and Young did not name specific EHR vendors or HIEs that are participating in data blocking. However, SearchHealthIT will continue to look into the issue.

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