Health group pushes info sharing

Markle Foundation Connecting for Health

Five years ago, Robert Brown's teenage daughter was diagnosed with a rare form of leukemia. Since then, her treatment resulted in serious life-threatening complications. Her condition was so complex, Brown began amassing and toting her medical records to the dozens of doctors, nurses and other health care practitioners because they needed the best, comprehensive information available to them.

"And the only way they could get it was for me to carry it from place to place," he said, adding he had three-ring notebooks with lab reports, tests and other information. Although his daughter's cancer is in remission, Brown called information sharing within the health care sector "horrible" and stressed the need for information technology investments to facilitate data exchange.

"You can't do it fast enough," said Brown, who recounted his experience during a June 5 landmark conference in Washington, D.C., sponsored by the Markle Foundation.

Last year, the foundation, with a $2 million initial investment, formed a public/private collaboration called Connecting for Health, which includes more than 100 participating organizations. The consortium has been working on creating common data standards for interoperability, securing the private transmission of medical information, including sharing and management, and developing a framework of what consumers will need and expect from an interconnected health information system.

An interconnected health system facilitated through IT, advocates say, could mean better data security, fewer errors, real-time exchange for critical information, better response to situations and ultimately lower costs for providers, payers and consumers.

Markle, with eHealth Initiative, a nonprofit group whose goal is to improve health care via technology, also launched the Health Collaborative Network as a tangible model for electronic data interchange.

The network provides a gateway between NewYork-Presbyterian Hospital in New York, Vanderbilt University Medical Center in Nashville and Wishard Memorial Hospital in Indianapolis and the Centers for Disease Control and Prevention, the U.S. Food and Drug Administration and the Centers for Medicare and Medicaid Services (CMS). The hospitals are initially sharing their discharge diagnoses, lab results and pharmacy orders.

IBM Corp. has been planning and designing the system for the past nine months. Bruno Nardone, the company's managing consultant and program manager, said the Web-based technology provides secure, reliable and quick transmission of data.

It uses open standards and is nonproprietary, he said, adding that it can fit with any type of system. Organizations providing data do not lose ownership of it and business rules can be set up to allow who can access what information, he said.

For public health organizations, the system could automatically transmit surveillance disease reports — raw data sets that do not reveal a patient's identity — in real time so organizations wouldn't have to wait for such information, which is largely the situation now, Nardone said.

Additionally, CMS can monitor whether its services are being delivered in a qualified manner, and the FDA can monitor adverse drug effects in any trials it's conducting with hospitals.

The system can be rolled out to other hospitals, pharmaceutical companies and private practice groups, Nardone said, and more health systems will be added. IBM provided the initial investment in research and development.

J. Marc Overhage, assistant professor of medicine at the Indiana University School of Medicine and a key contributor with the Connecting for Health initiative, said the Health Collaborative Network provides a "concrete embodiment" of the vision being created by the collaboration. It is also a learning tool to see how the federal agencies interact with the three hospitals.

"It's not the world, but it gives you a sense it can work," he said.