Experiment Launches to Share Health Data Across the Country

By M.L. Baker  |  Posted 06-02-2005
If you're allergic to aspirin, avoid having a heart attack where doctors can't access your medical record. Clinicians are sure to prescribe the drug, which will do you more harm than good. The same principle applies for dozens of other conditions in which optimal care for most is dangerous for some.

However, those from Massachusetts, Indianapolis, and Mendocino, Calif., should soon be able to travel between these areas worry-free.

These communities are launching an experiment to share health-related data.

The effort is intended as the first step toward creating a national health information exchange network built on common, open standards.

"You want your medical record to be there no matter where you are." said Zoe Baird, president of the Markle Foundation, the nonprofit organization spearheading the effort.

The Markle and Robert Wood Johnson foundations are providing $1.9 million in funding for the project.

Baird said the projects' intention was to establish common policy values for sharing and protecting health data, and then build the technical nomenclature and standards to support those policies. The first actual exchange of data should happen this fall.

Discussion of the NHIN (national health information network) has grown since David Brailer, the nation's Health IT Coordinator, called for its establishment last year. His office collected hundreds of responses to an open request for feedback last year and recently announced it would fund demonstration projects related to NHIN.

Also this year, IBM announced it would build a test system to move health information, in this case dummy data, from one network to another.

By one estimate, truly interoperable medical records could save nearly $80 billion a year, largely by eliminating unnecessary procedures.

However, experts have debated how to make such an exchange possible while protecting patients' information.

The principles guiding the launch of this network were worked out last year by members of Connecting for Health, a network of more than 100 private and public organizations managed by the Markle Foundation.

The data will be stored by individual health care providers rather than in a common repository.

That way, patients can talk to their own doctors what information can be shared with other providers, said Baird.

Connecting for Health also decided that information will be transmitted over the Internet.

The Internet has several advantages, said Baird and her colleagues at a press conference: It gives patients ready access to their information; it lets projects get started right away, and its current bandwidth should be sufficient for health care needs for the next several years.

These principles govern how patient information is transported from one system to another, not how the information from two systems will be integrated, said Clay Shirky, an adjunct professor in New York University's graduate Interactive Telecommunications Program who advises Connecting for Health.

Confusion about how to transport the data, he said, was holding back the market for vendors to find ways to make the data interoperable, he said, and common principles would expand the market.

On the other hand, he said, "Broad experimentation without standards will lead to further fragmentation."

However, John Lumpkin, vice chair of Connecting for Health, said the three-community project would likely "support and complement" other ongoing efforts, like those of IBM and Medem.

Representatives of those organizations belong to Connecting for Health, which would freely share findings from the project, he said.

"We're trying to avoid the situation of having different entities each individually trying to solve the problems."

The three communities were not actually chosen because patients from, say, Indiana, are likely to end up in an emergency room in California or Massachusetts, but because each community represents very different needs and resources. That means that the lessons learned from the project should apply broadly.

For example, the California community of Mendocino is rural, with fewer than 200 physicians, and has limited broadband connectivity and small hospitals that don't have their own data centers, said Will Ross, a project manager with Redwood MedNet in Ukiah, Calif.

Mendocino will be looking for ways to exchange data collected as part of federally funded programs to manage chronic diseases.

John Halamka, CIO of CareGroup HealthCare System, said more than 900 physicians were getting involved in Massachusetts, that a $50 million dollar effort had already been launched to fund adoption of electronic medical records in three smaller communities and make them interoperable between outpatient clinics, hospitals and other entities.

An additional $2 million a year had been pledged just for the connectivity grid, he said.

The Indiana Health Data Exchange and Indianapolis are also known for health IT savvy.

Lumpkin said the goal of the project was to find solutions that other health care providers could adopt quickly.

Rather than wait for a perfect solution that is 10 years off, he said, successful programs should "do the simplest thing that could possibly work."

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