WASHINGTON – Privacy issues continue to keep the country's planned nationwide health information network on the slow track, but government and community leaders say it won't be a problem going forward.

Yet things did not go exactly as the Office of the National Coordinator for Health Information Technology planned at a demonstration last month, where 19 cooperative organizations were scheduled to use real patient data to show how interoperability works. Instead, they used fictitious patient records to demonstrate greater depth in capabilities for interoperability than the initial trial run held in September.

The Office of the National, or ONC, held its second long awaited demonstration of interoperability Dec. 15 -16 at the Fifth Annual National Health Information Network Forum in the nation's capital.

Holding up the progress on building the network of networks, officials say, is the finalization of social agreements – how to protect information, and who is liable if there is a breach during the exchange of information.

However, technology experts, software providers, policymakers and regional health organization leaders participating in the December NHIN demonstration all agreed privacy concerns would not be a problem going forward. The technology is ready to go, they said.

It's all about the DURSAs

It's only a matter of time until data use and sharing agreements, or DURSAs, come through. Most regional health information organizations have their own agreements used within their exchanges, but to exchange data outside the RHIO requires a host of lawyers to resolve the untold scenarios that could evolve.

Marc Overhage MD, director of medical informatics at the Regenstrief Institute, one of the organizations participating in the NHIN demonstration, said he sees the December demonstration as a success despite the privacy hold-up.

Overhage is also president and CEO of the Indiana Health Information Exchange, an exchange with 10 million unique patients and nearly 10,000 doctors. The Indiana HIE has not completed its DURSA agreements with communities outside of its network, but Overhage is not surprised. "Everyone who has been involved in this has observed this work takes a long time," he said.

Indiana plans to have its DURSA agreement in place by the end of January.

What is holding up the works? Getting consent from the various custodians of the data, including hospitals, labs, and doctors. "Literally for us, hundreds of parties have to be comfortable with this agreement," Overhage said.

Leavitt's privacy doctrine

As if on cue, with just 36 days left in his tenure, Department of Health and Human Services Secretary Michael Leavitt released a privacy policy at the forum on Dec. 16. The policy is intended as a platform for further discussion, Leavitt said, and focuses on aspects of patient rights, safeguarding of data and HIPAA.

Though some regional health information exchange organizations have been successful in developing privacy agreements for the flow of information, others have not, Leavitt said. HHS also released a toolbox for organizations to use as a starting point for making DURSA agreements.

"Finding the balance between increased access to information and privacy is very important," Leavitt said. "If we don't have it, we won't succeed."

Banking on federal leadership

For some, privacy isn't the only problem. At Wright State University in Dayton, Ohio, Katherine Cauley, director of the Center for Healthy Communities, a participant in the NHIN cooperative, said her exchange is typical of most community RHIOs in the country. There is some local interest, but to most people on the local level health information exchange is still a far-fetched idea - especially for doctors who are wary of costs and initial disruption to workflow.

"Nobody wants to change how they do things. Everybody is worried about legal issues," Cauley said. "Everybody wants data, but nobody wants to go through the processes involved." Cauley believes federal leadership will be the key to moving things forward.

Social Security takes the lead

It looks like the federal government has the same idea. The Social Security Administration announced Dec. 16 it would be the first government agency to use the NHIN. Beginning in early 2009, SSA will receive medical records for some disability applicants electronically through the NHIN gateway.

Despite the obstacles, ONC leaders say the NHIN is making progress, and that progress will continue, they add.
Ginger Price NHIN coordinator for ONC said her office plans NHIN production, though somewhat limited, in 2009.

"The basic bottom line is we're starting simple. And we're starting with the ready, the willing, the motivated and we're starting now," Price told attendees of the forum. "As people get ready to come on board, we'll bring them on."

Standards are key

Jason Colquitt, director of research and outcomes at Greenway Medical Technologies, has been involved with the NHIN effort for years and is a member on Certification Commission for Healthcare Information Technology committees. He claims the NHIN is only as limited as its standards development.

"In my opinion it all falls to the Healthcare Information Technology Standards Panel. That's where the rubber meets the road," Colquitt said. "Many of the standards are already in place, but getting standards as robust as they need to be is the challenge."

Right now, standards have been achieved on a basic level, but to have a fully functional NHIN, they will have to be drilled down to a more refined level of detail. As the NHIN matures, it will require more and more granularity, Colquitt said.
The December demonstration is just one cog in a giant wheel that will continue turning, and already a source of excitement for many providers. "There is value in this level of exchange because we have never done it before," Colquitt said.