Groups wrangle over public access to subsidized health care data

Debate is growing over public access to anticipated data comparing the results of health care treatments subsidized by Medicare and Medicaid.

The records of physician claims paid by Medicare are not available currently to the public, despite court battles by consumer advocates to make the Health and Human Services Department release certain claims that are stripped of patient names. "No other vendors, besides those doing work for classified operations, have that kind of privacy," said Brian Klepper, managing principal of Florida-based market research firm Healthcare Performance.

"The health care industry has fought tooth and nail to block transparency and the public's understanding of what works, and what doesn't, and who's doing a good job, and who isn't," he said. Klepper added that the data HHS decides to publish should be understandable to the public. "People don't like to sift through endless tables," he said. "What they want to do is punch in: 'Who are the best performing doctors in my community for this procedure?' and have a list of six names come up. It needs to not be just lists."

The stimulus package provides $1.1 billion for HHS to compare the efficacy of health care treatments, partly to reduce the amount of money wasted on inadequate care covered by the Centers for Medicare and Medicaid Services. President Obama has said cutting health care costs, including government spending on health care, is critical to reducing the deficit.

In 1988, Paul Ellwood, often referred to as the father of the health maintenance organization, coined the term "outcomes management" to describe a system for collecting data on the effect of medical care on patients' health outcomes.

He proposed that such management consist of "a national database containing information and analysis on clinical, financial and health outcomes that estimate as best we can the relation between medical interventions and health outcomes, as well as the relations between health outcomes and money; and an opportunity for each decision-maker to have access to the analyses that are relevant to the choices they must make."

Twenty years later, this description has been largely unfulfilled, says Dr. David C. Kibbe, senior adviser to the Center for Health Information Technology at the American Academy of Family Physicians.

But under Obama, whose trademark has become greater transparency, Kibbe said "there will be increasing public pressure for transparency around outcomes of all kinds, including clinical effectiveness, quality-of-life issues -- the side effects, such as infections, and the cost."

"I'm not saying Americans should be forced to accept the cheapest form of therapy, but we should know what the costs are at all times," he said. "And if you are going to pay for an expensive treatment out of your paycheck, or your tax money, and there are less expensive treatments that have been shown to be equally or more effective, you shouldn't be forced to pay for the more costly treatment."

But Randy Burkholder, associate vice president of pharmaceutical industry group PhRMA, said there is a legitimate concern that comparative clinical effectiveness research can be misused to deny patients access to needed care.

The association expected policymakers will conclude that the research "is not well-suited to making coverage decisions," Burkholder said.

He noted that during her confirmation hearing, HHS Secretary-designate Kathleen Sebelius told lawmakers that "funding of research on the impact of different treatment options is intended to empower providers and patients, not to deny coverage of needed drugs by Medicare."

According to CMS spokesman Don McLeod, the agency reviews all relevant data before making a final decision on coverage determinations. "No single source of data is used solely to make a final decision. So, if [comparative] data is produced, we will look at it along with a lot of other things," he said.

Ideally, Burkholder said, HHS should develop protocols for disseminating the comparative information in collaboration with patients and doctors. The protocols "should ensure findings remain up to date . . . and should address issues like differences in patient needs and preferences, communicating uncertainty, and risk-benefit trade offs."