PHILADELPHIA - Ask some people at the mall how they chose their doctors and a big, but little heralded problem in health care quickly reveals itself.
When a blood vessel in her husband's brain broke three years ago, Laura Pfeil let the ambulance take him to an Abington Memorial Hospital surgeon recommended by an emergency room doctor at Doylestown Hospital. She knew nothing about either doctor.
"I didn't know anything about neurosurgery at all," the 60-year-old Warrington, Pa., woman said. "I had no idea."
Linda Smith of Doylestown, Pa., found her new pediatrician one night when her old one didn't return her calls. Where? The Yellow Pages. He was the only one open at 8:30 p.m.
Sheryl Branch, a 47-year-old Philadelphia woman, went to Temple University Hospital for breast cancer treatment. Branch, a nurse's assistant at Temple, tried to check out other programs, but finally went with her family doctor's recommendation. She underwent a bone marrow transplant last month.
'Take your chances'
With the news full of reports on medical cost-cutting, it makes people nervous that they can get better comparative information about new cars than about brain surgeons. In the quest for good medical care, people resort to asking a friend or physician, thumbing the Yellow Pages or reading a billboard on the way to work.
Branch believes she got great care, but she is well aware there's no way of knowing that. "You just take your chances," she said.
While politicians are grabbing headlines by curbing HMOs, growing legions of doctors, Ph.D.s, business leaders and consumer advocates are pushing for a key thing the health care debate has lacked: solid information about the quality of American medicine.
Many people pick the doctor closest to home because they figure that anybody who made it through medical school must be good. They believe one hospital is as good as another. But experts say quality can vary considerably.
It could be years before their efforts help people choose doctors, but these quality and "outcomes" pioneers are bent on doing things this country's medical system never bothered with when money was more plentiful: figuring out which treatments work best and are most cost-effective, and devising ways to compare the quality of health plans, hospitals and doctors.
"This is a field that's just exploding right now," said David Shulkin, chief medical officer and chief quality officer at the University of Pennsylvania Health System.
The first academic journal on medical quality appeared five years ago. Now there are more than a dozen. At health care quality conferences, "now, 5,000 people are showing up where two years ago there were 200," Shulkin said.
The presidential panel that recently called for a Consumer Bill of Rights demanded much more information about the quality of care people are getting.
Strong beliefs, but no data
And policy expert Mark Chassin, who heads the federal Institute of Medicine's committee on health care quality, believes American medicine has serious quality problems that predate HMOs. He, too, is calling for better information.
So far, most experts agree, quality measurement is in its infancy, so much so that it's difficult to answer the one question almost everybody has: Are things better or worse than they were before HMOs? "We don't even have the basic information about whether we're going north or south," said Dr. John Eisenberg, a former department head at Penn who now heads the federal Agency for Health Care Policy and Research. "People have strongly held beliefs about it with no data."
Then there are the everyday questions your mother or your neighbor are asking. Where should I go for hip surgery or to have my baby? Which doctor will give me the best chance of surviving leukemia? Who's the best plastic surgeon or psychiatrist in town?
"You can't today, based on the blunt instruments available, come to a firm conclusion on any of that," said David Nash, director of health policy and clinical outcomes at Jefferson Medical College. "That's the disappointing truth."
Even if their information falls far short of what most of people would like to know, researchers are capable of telling us a great deal about our medical system. Huge amounts of data already are being collected and used to change the way doctors and hospitals work, but little of it is reaching consumers, in part because the public has yet to demand it.
Paul Ellwood, a pediatric neurologist who is considered the father of the HMO movement, recently helped form the Foundation for Accountability (FACCT), aimed at developing quality measurements that are meaningful to average people.
"It's a terribly disappointing and frustrating thing for me to have played some role in transforming the largest industry in the world, the American health system, and have it fall short of what it could be simply because there hasn't been a demand for information about quality," Ellwood said.
Nonetheless, leaders at many academic medical centers and health plans are convinced that quality measurements will become important as HMOs find it harder to save money and are forced to compete in other ways.
"Quality is what matters," Jefferson's Nash said. "Quality is how we're going to purchase medicine in the future."
Researchers say many consumers will find it difficult to comprehend quality information at first, just as they did when they first saw nutritional information on food packages. Many people don't understand the most important thing about quality: It can vary significantly from doctor to doctor and hospital to hospital.
Many consumers also think that more care is better. In fact, experts say, too much care - unnecessary antibiotics or surgery, for example - can be just as bad as too little.
And, they mistake service - friendliness, hot food, convenient parking - for good medical care. While it is an important component of care, people would do well to worry as much about infection control and proper diagnosis.
Dealing with myths
"These myths or misunderstandings have to be dealt with before information is very helpful," said David Lansky, president of FACCT. And there's the problem of defining what quality is. Health, after all, is the result of the interaction of untold numbers of medical, social, genetic and financial factors, many of which a doctor or health plan cannot control. And quality means different things to different people. One of the simplest definitions is doing the right thing at the right time in the right way.
Quality is certainly more than making patients happy. Therein lies one of the inherent drawbacks of consumer satisfaction surveys.
"People can be satisfied with lousy care and dissatisfied with good care," said Paul Cleary, a Harvard Medical School professor who specializes in health quality and consumer surveys. More sophisticated surveys now ask people specific questions about how long they waited to see the doctor, whether they understood what the doctor told them and how they felt after treatment.
Fair comparisons of health plans, doctors or hospitals must include "risk adjustments" for differences in the severity of patients' illnesses, but how do you assign a numerical value to differences between two heart surgery patients, say, a 48-year-old who is otherwise in good health and a 75-year-old, overweight smoker with a longtime drinking problem?
One of the barriers to evaluating doctors is that even the busiest don't see enough patients to allow comparison of performance in a statistically meaningful way.
Independence Blue Cross and Aetna U.S. Healthcare know in considerable detail how doctors and hospitals treat patients, but neither releases data to subscribers. Aetna will give out patient satisfaction ratings, though.
"What most of the information we have shows is what's been reported in the public arena, and the public doesn't seem to care about it," said Arthur Leibowitz, chief medical officer at Aetna. "And that is that volume is related to clinical outcome." Doctors who do the most surgery, the most cancer treatment or read the most mammograms have the best results.
Pub Date: 5/10/98