Giving Patients the Data They Need

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Often, specialists tune out facts that challenge their cherished beliefs about the benefits of what they do, says Dr. Albert G. Mulley, professor of medicine and health-care policy at Massachusetts General Hospital. "Urologists love the sense of heroism they feel when they 'save' men from prostate cancer," Mulley says. "What they forget is that 97% of men die of something else and that the evidence supports the skeptics."

An analysis by Mulley shows these misconceptions skew even the scientific view of disease. Once physicians acquired the ability to prop open or bypass clogged arteries, those narrowed arteries came to be seen as the main cause of heart attacks. Yet there had always been evidence for a different cause: unstable plaque in arteries that ruptures, leading to dangerous or fatal clots. Now that studies are showing stents and bypass surgery usually don't prevent heart attacks or death, the unstable plaque theory is making a comeback. But the message isn't getting out. In focus groups with patients, "I have yet to find anyone who thought there was any choice," says FIMDM president Floyd J. Fowler Jr. "They all think that the angioplasty or bypass operation saved their lives. It's astounding how distorted people's perceptions are."

To combat this problem, Dartmouth's Weinstein shunted doctors aside when he created the first shared-decision-making center a decade ago. Just as patients go to a separate lab to have blood drawn, they go to a nearby facility at Weinstein's spine center to see an FIMDM video and have a chance to talk about their concerns. For patients with herniated discs, the video explains that outcomes are about the same whether they have surgery or not. Once the program started, rates of spinal surgery at Dartmouth, already lower than the national average, dropped 30%.

Health insurers are implementing similar strategies. Pennsylvania's Highmark tries to contact patients when a claim comes in for an MRI for back pain, showing that they may be facing a choice. "We may send a card saying, 'Do you know you can call in for materials?'" says Chief Medical Officer Dr. Donald R. Fischer. HealthPartners in Minnesota has started to require that patients get authorization—and be offered a shared decision-making experience—before undergoing spinal fusion. In California, Health Net (HNT) uses automated calls to reach people with chronic conditions, offering the chance to talk to a health coach or nurse, who then tells patients they can download decision-making videos to their computers. Some 20,000 patients have participated, and "the incidence of elective procedures has been decreasing," says Health Net's chief medical officer, Dr. Jonathan H. Scheff. "The cool thing is that this is not about saying 'no.'"

So far, these efforts reach only a tiny percentage of patients. When FIMDM was set up in 1989, "we totally minimized the difficulty of getting this used," says Massachusetts General's Mulley. One reason is that people are naturally suspicious of information from insurers or employers. "The tension in this is whether it is just another way to talk patients out of something expensive," says Kaiser's Wallace.

Dr. Donald S. Baim, chief medical and scientific officer at Boston Scientific, notes that reducing chest pain is a major benefit of angioplasty. Still, "there are patients receiving angioplasty where clearly they can be as well treated" with drugs, says Dr. Ralph G. Brindis, president-elect of the American College of Cardiology.

There's another obstacle in getting information out: It's hard to reach patients before they've seen their specialists and gotten a perhaps incomplete picture of the risks and benefits of a procedure. That problem is particularly acute with angioplasty, because patients are typically whisked in for the procedure immediately after having diagnostic tests.

To get more information to patients, advocates are pushing to change the incentives in the health-care system. The Washington State law, for instance, mandates demonstration projects in shared decision-making and raises malpractice protections for doctors who use the approach. Other ideas include adding reimbursements for the decision-making process itself or paying a flat rate for an episode of, say, back pain, regardless of the treatment. The potential of these steps to reduce overuse of procedures—and cut costs—is huge. Overall, "there is good reason to believe 30% to 40% of what we are spending goes for unnecessary services and inefficient care," says Dr. Elliott S. Fisher, professor of medicine and director of the Center for Health Policy Research at Dartmouth Medical School.

The field is also expected to get a boost from new comparative effectiveness research. Despite objections from drug and medical-device makers, which fear their oxen may be next, the Obama Administration is pumping $1.1 billion into trials that will compare treatments. "We're at a tipping point," says Dartmouth's Weinstein. "When patients are well informed, they make different decisions. If they really don't want interventions like surgery, and the outcomes are the same or better, why not do this?"

Carey is a senior correspondent for BusinessWeek in Washington.

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