Why Health Reform Will Be a Danger to Passive Patients

Professor Joel Reidenberg in U.S. News & World Report, November 09, 2009

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True health reform may well take a generation, as the nuts and bolts of a massive new system are sorted out and assembled. But it seems clear that a sea change is coming in the way Americans experience and pay for healthcare—one that will require us to develop a whole new set of muscles. The thousands of pages of legislation penned to overhaul the nation's healthcare system touch every nook and cranny of medicine, changing the relationship of doctors and patients, rewriting textbooks of medicine with more focus on staying well, and setting new rules for how treatments are—or are not—blessed. "The ball is moving, and once you get it going downhill, it can't be stopped," predicts Henry Aaron, a health economist at the Brookings Institution who is confident that the kind of transformation envisioned by the president will happen, even if not before year's end.

The soothing promise of healthcare reform is that all will be covered and that insurance can never be canceled and won't run out. That will come as a huge relief to Americans fearful of losing coverage along with a job or facing financial ruin because of a health catastrophe that overwhelms their insurance limits and their savings. But the promise is by no means a signal to relax. Getting the best care in a system steered by black-and-white medical guidelines ultimately set and enforced by faceless governmental bodies will not be easy, especially for the passive patient unwilling to engage or question the system. Consider the ways you'll be called upon to manage your healthcare in medicine's new era:

Learn to work with a team. Today, about 80 percent of healthcare is delivered by free-standing mom and pop shops. You see your primary-care doctor for a cold; an old ligament rupture has you looking for an orthopedist specializing in knees; a racing heart speeds you to a cardiologist who handles the organ's electrical systems. Three separate medical charts, none connected to the others. The knowledge explosion in medicine has led to superspecialization and fragmentation—if not chaos—that bedevil the system today, says James Mongan, a physician, president of Boston's Partners Health Care System, and coauthor of Chaos and Organization in Health Care. What must replace this chaotic approach, he argues, is a team-oriented organization that closely coordinates care. Some have called it a Mayo-ization of medicine, after the clinic where for almost a century doctors from every medical domain have worked together as a salaried staff, fully integrated with the hospital.

It's coming. A variety of models being tested as part of health reform draw from the Mayo design. In an "accountable health organization," a population of patients is cared for by an integrated system of hospitals, generalist and specialist doctors, and other health professionals, who track people's use of services and outcomes and are paid as a group based on performance. Similarly, a "medical home" model puts primary-care doctors, or perhaps nurse practitioners, in charge of patients, paying them a separate fee to be the overseer of your health and your chart and to help you access specialists in a coordinated way. In both of these models of "patient-centered" care, the individual becomes part of the team and is expected to take an active role in his or her own care. The first key responsibility: Find a doctor who is available to you and part of a network you trust and are happy with. The swine flu epidemic has given a lot of people a jolt about the need to have a doctor they can call their own—ahead of that fever of 103.

Keep tabs on your medical records. If things go as planned, everyone's medical record will soon be in highly accessible digital form and become part of a national data trove available to patients, caregivers, and researchers through the Internet. Actively involved patients will find every page good reading and each new entry a reason for thought. No doubt the privacy issues raised by electronically transmitted records are being taken seriously, but ask: Is it necessary to add details that you consider sensitive and highly personal, such as past mental-health or marital issues or a distant history of illegal drug use or gonorrhea? Consider the story of baseball player Alex Rodriguez, whose supposedly anonymous steroid screens from years back were leaked recently, putting him in a heap of trouble long after the fact. Last month, Fordham Law School professor Joel Reidenberg released a study of education records showing that sensitive information on schoolchildren, such as teen pregnancy or juvenile brushes with the law, is sitting in state electronic warehouses sometimes for decades, at risk of being breached despite federal privacy laws. Moreover, while you can't change details in an electronic medical file after the fact, it's important to find errors, since you can note a correction.

Be an educated patient. Today, with any medical issue a few intelligent Google clicks away, patients are empowered to freely pursue the latest therapies. That freedom is almost sure to be curtailed; by relying on comparative-effectiveness studies to determine what should be standard care, a more centralized medical culture will focus on what's best for most people. This will narrow patient and physician choice, experts predict, and sometimes collide with medicine's drive toward more personalized therapy tailored to an individual's genetic makeup. The bottom line: It will be more important than ever to understand what science is discovering about your colitis treatment, say, or your child's recently diagnosed leukemia.

Comparative-effectiveness studies that tap large patient databases to compare both effectiveness and cost are unlikely to get it right every time. Individual patients don't always fit the mean, and newer science can quickly outdate older studies. Moreover, medicine is rife with reasonable but conflicting interpretations of the same findings. Just recently, two respected studies of prostate-specific antigen screening initiated in men at middle age were published at the same time in the same journal. One found that PSAs saved lives and decreased the disease's spread to bone; the other showed no benefit from the tests. Currently, the U.S. Preventive Task Force, a standing advisory body to the Department of Health and Human Services, makes no recommendation on PSA screening for men under 75 years of age because of insufficient evidence. And it says that screening should not be performed in men over 75, since the potential for harm outweighs the benefit. In contrast, the American Urological Association asserts that the yearly screening test should be offered to men ages 40 and older, including those over 75 if they have a life expectancy of at least 10 years.

Under health reform, a new governmental committee will follow the lead of the preventive task force when it rules whether preventive tests should be covered, and equivalent advisory groups when it comes to treatments—not the specialty physician groups closest to the patients. While it remains to be seen how dueling judgments will be handled, know that you might need to decide whether to pay for a test or a therapy out of pocket.

Or perhaps you might agitate politically for a different ruling. The British national health system, which is comfortable making tough rationing decisions, has recently experienced a few dust-ups with the public after denying some very expensive drugs for some very serious illnesses, like cancer and blindness. Anguished patients and furious doctors took to the streets. Joseph Antos, health policy expert at the American Enterprise Institute, points out that Americans aren't known for their tolerance when personal choice is pitted against central decision making and has wryly commented that "inside every American beats the heart of a subversive." Raising uncertainties about the gray zones may fall to the patient. And certainly, more tightly controlling care—setting tougher standards for, say, hospital readmissions of the chronically ill—will offer an incentive for patients to exert their own form of control: staying well.

Manage your pocketbook. The Congressional Budget Office, the financial Yoda that has been modeling just what health reform would do to government outlays, estimates that it will require $1 trillion or more between 2010 and 2019 to take care of America's uninsured. Medicare programs will give up almost half of that, making the elderly unnerved. The other half will be raised by taxing the wealthy as well as some combination of drug and device makers, insurers, or those with especially rich coverage. But the CBO looks at only the federal pocketbook. What's unclear is the impact on family budgets of mandates, premiums and copayments, other out-of-pocket costs, taxes, and fines. For example, expanding Medicaid to include many of the uninsured is bound to hit families if states—which lack the luxury of printing money—raise taxes to pay their share.

Lately, there's been an acerbic war of numbers between the White House and insurance companies over how much reform will actually stress Americans' wallets, leaving the average observer with a case of whiplash. Just recently, several insurance groups released estimates of what might happen to the cost of private coverage. On average, premiums would go up, though not for everyone. WellPoint projects that a 25-year-old healthy man from Los Angeles (without parents to help him out) would see his monthly premium more than double, while a 60-year-old less healthy couple in the same town would see a 37 percent premium reduction.

The White House quickly dismissed the insurers' reports as bogus, pointing out that federal subsidies will temper the cost burden for individuals with incomes of about $45,000 or less and families of four who make about twice that. (Families whose yearly income creeps up past $90,000 will face full premium costs.)

In any case, you'll retain some control over your premiums. As is true now, a health maintenance organization would generally cost less than a plan that offers a wider range of hospital and doctor choices. On the new health insurance exchange, people would shop for the best price available for the same mandated benefits among a variety of private plans and possibly one set up by the government. They would also be able to lower their premiums by accepting higher copayments, should they get sick. (On the other hand, one could elect to pay more for such supplemental benefits as dental and vision care that aren't in the mandated package.)

Managing copayments wisely demands two things: that you have money set aside to pay them and that you start insisting upfront on information about the price of any treatments you face. Comparison shopping can save smart patients hundreds to thousands of dollars, since prices of even standard tests like an MRI or an exercise stress test can vary wildly for no apparent reason. But patients will need to nudge a medical culture that's not been comfortable laying out charges ahead of time.

Price-conscious folks, particularly the young and healthy, might want to think seriously now about choosing a low-cost, high-deductible "catastrophic" plan that allows them to funnel tax-free dollars into a medical savings account. These policies will be phased out under health reform, but the president has assured people they can keep a plan they like even if it doesn't meet new specs as long as they're in it before the new program is implemented.

When President Obama began selling reform, he cited the threat of healthcare costs to the entire economy as a prime driver. But savings will take time. In late October, the chief actuary at HHS reported that over 10 years, total national spending on healthcare will rise more under the proposed system than without it. That doesn't surprise University of Virginia policy expert Elizabeth Teisberg, coauthor of Redefining Health Care, who cautions about creating a whole new expensive system without first understanding whether it offers good value. It's perhaps a stretch, but some experts claim that half of all delivered care doesn't really help the patient. Teisberg says, "As we bring more people into the system, we have three choices: Spend more, ration more, or improve value." From the patient's point of view, the choice is obvious.