Well-educated patients guide their own care

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."

Since all NIH patients need an overseeing physician, social workers soon connect patients with a doctor to call their own, Dr. Gallin said. And he would prefer that patients arrive knowing their physician's name. Still, he says the self-referred patient has certain positive attributes -- for instance, they tend to be well-informed. "The more informed the patients are, the better."

An abundance of information

Medicine and biotechnology are big businesses now, and new findings are thoroughly explored in newspapers, magazines and books.

"Health is everywhere," said Kay Dickersin, PhD, director of the Center for Clinical Trials and Evidence-based Healthcare at Brown University in Providence, R.I. "It's in books, on TV, there are stories on diet, exercise, heart health and cholesterol." It is also a topic of Internet searches.

"Ten years ago, not everyone had access to a computer at home. Now, many people have home and work access, and there is more than one computer in the family," Dr. Dickersin said.

But the spread of computers might have bypassed poorer people, thus increasing the possibility that a two-class society is being created, Dr. Gallin said. "I think we all worry about that a lot," he said, although public libraries' offerings of computer access could counter some of this.

Mary Woolley, head of Research! America, a nonprofit health research advocacy organization, sees a trend toward more patient self-referral to all research studies, not just those at the NIH clinical center. "While just 10% of the population is accessing clinical trial Web sites, 10% is a lot of people," she said. "And I think we are just seeing the beginning."

"Patients want to be engaged not just as a patient but as a partner and ultimately as the boss of their health care. That's a real change in their relationship with their physicians."

Not only is information more accessible, but physicians and their patients often hear about the latest health care advances simultaneously. "A generation ago, people might not have ever seen the information, or they may have seen it filtered through several layers, including medical journals and their own physicians," Woolley said.

The research enterprise is also several times larger than it was 10 years ago, both in the private and public sectors. "There are more hands at the wheel doing research and generating more output," she noted.