Why Health Reform Will Be a Danger to Passive Patients

Even if Congress soon ends health insurance worries, your job as an informed patient will be key.

Video: Health Insurance Basics

Video: Health Insurance Basics

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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.