South Carolina keeps secret a storehouse of health data that, consumer advocates say, could tell residents which Palmetto state hospitals are doing a good job and which ones aren’t.

Consumer groups say the data could provide patients invaluable information about their health care providers and improve the health care system. New York, Pennsylvania and Texas already make data available to their residents that rate hospital care.

But an S.C. board that oversees the data says it doesn’t paint an accurate picture of hospital quality. The public wouldn’t understand the data and could be misguided if given access to it, the board says.

Resolving the issue is important because consumers make life-and-death decisions about health care but have few places to go for detailed information about the quality of health care providers.

In South Carolina, hospitals send a record of every case they handle to a state repository.

These electronic records could be used to compare hospitals on procedures ranging from heart surgery to Caesarean sections. It could tell people which hospitals have a higher death rate for patients undergoing gallbladder removal, for example.

Publicly releasing the data would help consumers make better decisions and force bad hospitals to improve, said Lisa McGiffert, a senior policy analyst with the Austin, Texas, office of Consumers Union, the nonprofit group that publishes Consumer Reports magazine.

“We believe that unless the public sees it, hospitals will not have the incentive to improve,” McGiffert said.

However, the board that controls medical data in South Carolina has kept most of the information private.

The Data Oversight Council, a 16-member panel appointed by the governor, must approve the release of the data.

The council releases data for research purposes only. It will not identify specific hospitals or individuals.

The council is open to change but fears the data could be misread by the public, said James Rook, a Greenville investment adviser who chairs the council. Rook holds a council seat reserved for businesses in non-health care fields.

The data collected in South Carolina is not the best source for measuring quality of care and could improperly taint good hospitals, he said.

“I’ve spent too much time in my life working with the data to know it can do more harm than good,” Rook said.

Gov. Mark Sanford hasn’t looked specifically at whether the data should be released, said Will Folks, a spokesman for the governor’s office. Elected last year, Sanford has yet to make an appointment to the council.

However, Sanford generally is in favor of making information available to the public, Folks said. “The governor has a bias toward openness and allowing the free flow of information between the people and their government.”

GETTING INSIDE HEALTH CARE

Health care trails many other areas in the amount of detailed information available to consumers.

Before buying an automobile, consumers can find the history of a specific car. Every S.C. restaurant must post its food safety ratings for customers to see.

Charities must provide financial reports to the public to continue collecting donations, and the state requires schools to report the test scores of their students.

Hospitals must meet certain standards to be accredited, but the commission that provides that stamp of approval is supported by fees paid by the hospitals.

Consumer groups say the health care industry lags others in reporting information to the public because, among other things, health care is a complicated field and most patients are reluctant to question their doctors.

Many in the health care industry also have been reluctant to release information because they’re afraid it could be used against them in malpractice lawsuits.

In a handful of states, though, consumer groups have won the right to see data about specific health care providers. In those states, learning about hospitals is only a few mouse clicks away for consumers.

In 1989, New York began reporting detailed information about the outcomes of heart surgery at specific hospitals.

A study by New York City’s Mount Sinai School of Medicine found that in the first 14 years of the program, death rates from heart surgery decreased 41 percent statewide.

Poor-performing doctors left the state, and hospitals with problems started programs to improve their care, the study found.

Publicly releasing the data has had a positive impact on health care in New York, said Kristine Smith, a spokeswoman with the N.Y. State Department of Health.

Some hospitals that scored lowest in the early reports have adjusted their processes and now rank among the best in the state, Smith said. “The bar has been raised for everybody and patients are the ones who benefit.”

But critics say releasing the data can backfire. To improve results, some hospitals turn away high-risk cases or refer them to other hospitals, they say.

Other states, however, have followed New York’s example by releasing detailed health data on hospitals.

Pennsylvania produces an online database that tells patients how hospitals perform in handling more than 25 types of health conditions.

Last year, Texas produced its first report card on hospitals. That state has a Web site where consumers can compare hospitals on commonly performed procedures, such as heart surgery and hip replacement.

PROVE THE PUBLIC WILL BENEFIT

South Carolina has been collecting health information for decades. In the 1980s, the state began collecting medical bills from hospitals to track costs.

The bills also contain data that could track cases handled at the hospitals. For example, if a patient has heart surgery at a hospital, the system could track the next time that patient returns to a hospital and why that person returned.

The data is housed at the state’s Office of Research and Statistics, part of the state Budget and Control Board.

Each year, the office collects more than 3 million medical records from health care providers, including hospitals, home health agencies and some outpatient centers.

Health care providers can be fined as much as $5,000 per instance for not filing data on a quarterly basis. The cost of administering the program is $117,000 a year, covered mostly through fees paid by groups that use the data, said Mike Sponhour, spokesman with the Budget and Control Board.

Unlike other state-collected information, the heath data is not subject to public disclosure because a separate law was passed to make it private, state officials say.

Some general information about hospitals is put on the Web site of the Office of Research and Statistics. But the data only tells how many procedures are performed, not how the patients fared.

For example, the Web site tells a consumer the number of heart surgeries performed at a hospital. But it doesn’t say how many of those patients died during or after the surgery.

To deal with how best to disseminate the data, state lawmakers in 1993 set up a state Data Oversight Council, which must approve requests to see the data.

In recent years, state leaders have paid little attention to the council. A governor hasn’t appointed anyone to the council since 1997, leaving half of its 16 seats vacant.

Spokesman Folks said Gov. Sanford is considering appointments to the council but doesn’t know yet when those will be made.

When it is filled, the council is made up largely of members of the health care industry. Seven of the council’s seats are reserved for health care representatives.

It has four seats for non-health care businesses and one for the state Chamber of Commerce. The remaining four seats are for government officials, including the director of the state Department of Health and Environmental Control.

To protect patient privacy, the state removes names from the records collected and replaces them with random numbers. Individual hospitals could be tracked, but the council has chosen not to do that.

Since 1994, the council has approved 97 of the 121 requests made for access to the data.

None of the approved projects identified the quality of care at specific hospitals. Most projects dealt with state or regional trends, such as a 2000 study that looked at the immunization of children younger than 5.

The Charlotte Observer, the only media organization that has asked for data, did not receive approval for a request it made earlier this year.

The Observer asked for the Caesarean-section rates at S.C. hospitals. The newspaper is owned by Knight-Ridder, which also owns The State.

State officials who collect the data and help applicants analyze it say it has limitations because it’s based on medical bills, which don’t include a detailed history of patients’ conditions .

The bills include data such as the age and sex of patients, but doesn’t say how healthy patients are when they undergo a procedure. It can provide the outcomes of procedures because patients are logged each time they’re treated at a hospital.

The S.C. Hospital Association opposes wide release of the data because of its limitations, said Ken Shull, president of the group, which represents about 90 hospitals and holds a seat on the oversight council.

“If we’re going to give something to the public, it needs to be accurate,” Shull said.

Council chairman Rook declined to talk about why the council approved or rejected certain applications. But he said it has sided with keeping data about specific hospitals private.

When reviewing applications from outsiders seeking data, the council looks for benefits to the public, Rook said. Releasing the data in its current form would not benefit the public, he said.

“We want them (applicants) to prove to us convincingly that the public will be helped more than hurt,” Rook said.

CRITICS: PUBLIC HAS RIGHT TO KNOW

In the states where data is released, steps have been taken to ensure it presents an accurate picture of quality of care.

In New York, for example, the state collects clinical data instead of the medical bill. The clinical data includes factors such as the health of the patient and severity of the condition.

Consumer advocates, though, say South Carolina’s billing data is useful and could be used to measure quality of care.

South Carolina’s system is not the best at assessing health conditions, but it could help consumers make better decisions, said Lynn Bailey, a Columbia health care economist who has used the data in her consulting work.

The data could be adjusted, using other information, to provide a good picture of hospital quality, Bailey said.

For example, the data could be weighted based on general demographic information about the area served by each hospital, she said. A hospital that serves a poorer population wouldn’t be penalized as much for lower success rates because the health condition of its patients is likely to be worse.

Since the data goes back two decades, consumers also should be able to look at a large enough time frame to smooth out inconsistencies, Bailey said.

At the least, it would be a starting point for educating the public and would give them a basis for choosing health care providers, she said.

As consumers are asked to pay more of their health costs through rising insurance premiums, the state has a duty to make this information available to the public, Bailey said.

“If patients have to make more decisions, they have a right to have better information available to them than they currently have,” Bailey said.

Fear of having data misinterpreted is a poor excuse for not releasing it, said Arthur Levin, director of the Center for Medical Consumers, a New York-based group that has pushed for a more open health care system since 1976.

If the South Carolina data isn’t good, Levin said he wonders why the state is collecting it in the first place. Obviously, the data has value, he said.

“It should be available and made accessible so people can use it,” Levin said.

As long as the data is kept private, the public will never have a chance to understand it, said McGiffert with Consumers Union.

Hospitals also won’t improve unless the data is released to the public, McGiffert said.

For years, the health care industry has said it will use internal studies to improve its processes, she said. Until the information is released to outside groups, though, dramatic change won’t take place, McGiffert said.

Consumers can use the data to make better decisions about their health care, and businesses can use the information to decide which providers to include in their health plans, McGiffert said.

“The pressure will be put on them to improve quality.”

ONLY A MATTER OF TIME?

Rook, chairman of the oversight council, said it could open the data to the public one day.

State law says the names of individual hospitals should be kept private, but the law allows the Data Oversight Council to identify hospitals if a good reason is presented.

A consumers group has never asked for the S.C. information, Rook said. If a group can make a good case for the public’s benefit, the council would consider opening the data, he said.

“If we can convince ourselves or be convinced by others that, on balance, there would be public good by doing that, we would certainly consider it,” Rook said.

Shull with the state hospital association said the public soon will have access to specific information about hospitals anyway.

About half of the state’s hospitals have agreed to submit information to a nationwide quality improvement initiative promoted by the American Hospital Association. The program, which should include S.C. hospitals within the next year, is voluntary.

It will rate hospitals based on whether they are following accepted practices, such as giving patients aspirin and beta blockers when they arrive at the hospital with heart problems.

But the quality initiative won’t include information about procedure outcomes, such as how many patients died during or after a procedure.

Hospitals and consumer groups eventually will develop a system that satisfies everyone’s concerns, Shull said.

“You cannot argue against making medical information available to the public,” he said. “We just want to make sure it’s accurate information and understandable.”

Levin with the Center for Medical Consumers said states that don’t move forward in making all data available to the public will risk having worse health care.

It’s only a matter of time before more states join places like New York, Pennsylvania and Texas, Levin said.

“The train has left the station. It’s happening.”

Reach Collier at (803) 771-8307 or jcollier@thestate.com.