Health-Care Needs Standards For Sharing Data

It's become standard operating procedure: When going to a new doctor or specialist, you fill out the same forms on allergies, illnesses, and other medical history that you've provided to doctors many times. But doctors have very limited ability to share their records, a problem that a group of health-care leaders is trying to solve with a proposal it outlined Thursday.

Connecting for Health, a collaboration of health-care leaders from the private and public sectors funded by the Markle Foundation, released a report proposing that key de-facto data standards used in the industry should become national standards to ensure that health-care providers can share patient clinical information with each other.

"Health care is stymied in the ability to move information, and this hurts the most at point-of-care," says Dr. Carol Diamond, a chairperson of Connecting for Health and managing director of the Markle Foundation's Information Technology for Better Health program. The Markle Foundation is a private philanthropy focused on communications and technology to improve people's lives.

The standards would also let government health agencies aggregate information when needed. For instance, the Centers for Disease Control and Prevention wants to improve its ability to more quickly detect outbreaks of naturally occurring illnesses, as well as possible bio-terrorist attacks, through the collection of data regarding patient symptoms across the U.S. Also, the Food and Drug Administration wants to collect better data from hospital lab and pharmacy systems that could provide information about adverse drug reactions. This can't be easily done without clinical data standards.

"Many hospitals collect this kind of lab and pharmacy information electronically and can generate reports for internal use, but once it's collected it can't be electronically shared--information is often sent to agencies by paper," says David Liss, VP of government relations at New York-Presbyterian Hospital. "You have to have interoperability for clinical health information, otherwise it cannot be shared, and standards are the linchpin of interoperability."

In addition to the proposed national clinical data standards, Connecting for Health's report illustrates best practices for patient privacy and security by various health-care providers and hospitals, so that patient confidentially is still protected as clinical data is shared electronically, Diamond says. "Examples of these real-world best practices are compliant to HIPAA (the federal Health Information Portability and Accountability Act) and beyond," she says.

The Connecting for Health report also proposes programs for patients to have easy access to their own personal health information.

Carole Cotter, CIO at LifeSpan Inc., which operates four hospitals in Rhode Island, says the lack of national clinical data standards has been a significant roadblock in the ability of doctors even in the same medical group to quickly and easily share important patient information. "You can take your ATM card and do banking anywhere," she says. "If there was this level of access to your medical records, health care could be a lot easier and improved."

For the standards to catch on, New York-Presbyterian's Liss says health-care providers will need to demand that their IT vendors provide products and services that comply with national clinical data standards. "Providers need to say 'This is what I want to buy,' and the vendors will need to listen."