Well-educated patients guide their own care

The big business of health care is generating an abundance of medical information that is welcomed by savvy patients.

By Susan J. Landers, AMNews staff. Sept. 20, 2004.

Washington -- The Mark O. Hatfield Clinical Research Center at the National Institutes of Health, due to open this winter, is vastly different from the adjacent 51-year-old NIH clinical center. So are the new brand of patients it will house.

For one thing, most are no longer referred by physicians, and many say they don't even have a regular doctor.

They are part of a patient group that appears to be assuming control of their own health care. They are well-educated, extremely computer literate and also happen to have a disease or condition the NIH is interested in treating.

"Ten years ago, 100% of the patients were referred by physicians; it was required," said John Gallin, MD, director of the NIH Clinical Center and associate director for clinical research. "The way we got patients is we would send out booklets to most physicians in the country outlining protocols. And they would refer patients."

Now, about 62% of patients are self-referred and, of necessity, the physician-referral rule was eliminated.

In another change over the past decade, the patients no longer seem to consider themselves under the care of a specific doctor. "My impression is that almost every patient had a physician 10 years ago. But now, 35% of patients who walk through the door say they have no physician," Dr. Gallin said.

Managed care has triggered that change, he said. Instead of a physician's name, patients are likely to identify Blue Cross Blue Shield or CIGNA as their health care provider, he added. "My sense is that the statement that patients don't know who their physicians are goes way beyond NIH and is a true statement for the country."