Going Online to Make
Life-and-Death Decisions

DIAGNOSED WITH high cholesterol at the age of 25, Arun Menon knew he was a ticking time bomb. His father had died of a heart attack, and his doctor warned a few years ago that he'd probably have one himself by the age of 40 if he didn't start taking medication and watching his health. Mr. Menon, now 37 years old and a Dallas auto-service manager, says he went on the cholesterol-fighting drug Lipitor -- but wanted to start taking a more active role in his long-term treatment plan.

Surfing the Web, Mr. Menon came across the American Heart Association's Heart Profiler site, an interactive tool that asked for personal medical data -- ranging from age, gender and race to triglyceride level and blood pressure. After filling out a questionnaire, he got back a personalized list of treatment options, questions to ask his doctor, even clinical trials he might be eligible for.

Mr. Menon says he found "validation" for the treatment plan his doctor recommended but also learned more about other options. Now, he regularly updates his profile on the site so he can monitor his own risks and keep up on the latest research. "It was a real eye opener," he says. "Now when I go see the doctor, I am informed, and really know what he is talking about."

The Heart Profiler site (www.americanheart.org¹) is one of a growing number of increasingly sophisticated and personalized online tools consumers can use not just to figure out their risk of serious diseases such as heart failure, coronary artery disease and some of the most common cancers -- but also to make life-and-death treatment decisions once they are diagnosed.

Other groups, including the American Cancer Society (www.cancer.org²), American Lung Association (www.lungusa.org³) and the Mayo Clinic's consumer-health site (www.mayoclinic.com⁴) are putting up free interactive tools that run the gamut from determining which treatment to choose for prostate and lung cancer to calculating your chances of living for another 10 years under different breast-cancer treatment scenarios. More interactive tools are on the way.

Such tools have great potential to help consumers sort through the vast trove of health information online and get data tailored to their own unique medical conditions. But many Web-based profilers have some sort of sponsorship from drug companies, clinical-trial recruiters or other companies with a marketing agenda that patients should be aware of before participating.

The cancer, heart and lung associations all use a patented system licensed from NexCura, a Seattle company with tools for 20 kinds of cancer on its Cancerfacts.com site. The profilers require users to enter e-mail addresses, and NexCura will try to match you with a clinical trial and may release your medical and contact information to pharmaceutical companies unless you specifically opt out. Of course, receiving such information can be a good thing, enabling you to learn about trials your doctor may not know about. Cholesterol drug maker Kos Pharmaceuticals and cardiac medical-product maker Guidant sponsor the American Heart Association's profiler tools, but all the companies get in return is an icon on the Web site where consumers can click to learn more.

Even proponents of the profiling tools warn that they are no substitute for consultation with a doctor -- and can't help every case. "It's not a doc in a box," says Howard Mahran, NexCura's chief technology officer. "There is no way for us to get as personal as you can with your physician about your individual case."

"There isn't a one-size-fits-all solution for everyone who comes to the Web site," adds Brooks Edwards, heart-transplant medical director at the Mayo Clinic and medical editor of MayoClinic.com.

Mayo offers eight "Health Decision Guides," covering everything from early-stage prostate cancer to hormone-replacement therapy to children's middle-ear infections -- but they aren't interactive. The site tries to avoid "high-tech toys that don't enhance the experience for the patient," Dr. Edwards says. "We are always struggling with the question of what is a bell and whistle and what is adding real value for consumers."

As personalized as they are, users may find the profiling tools don't ask the right questions for their specific case. The American Heart Association' high blood-pressure questionnaire asks when a 74-year-old woman was first diagnosed with the disease -- but doesn't allow entry of a date earlier than 1991.

The tools can also be cumbersome, confusing and time-consuming: On a recent test run of three tools, just making sure the right boxes stay checked while moving through the questionnaire was a challenge.

But if you want to educate yourself about serious health threats -- and have the patience to complete the questionnaires and sift through all the treatment options -- you are likely to find surprisingly sophisticated and up-to-date information backed up by published medical evidence.

Experts also caution patients to be especially careful to stick with tools offered by reputable groups that don't have a strong agenda or ask for too much personal information. Dr. Edwards says patients should stay away from any interactive decision-making site that advocates its own favored therapy or promotes one course of treatment over another.

To get the most out of the tools, patients will need to be more aware than many are now of their own health status, recent test results and medical and family history. One question asked of heart patients: "Is your left ventricular ejection fraction normal?"

For some patients, seeing the survival statistics in a cancer diagnosis can be frightening. MayoClinic.com's newest tool, which invites women weighing the pros and cons of postsurgical chemotherapy or hormone therapy to calculate their likelihood of surviving 10 years without their breast cancer coming back, starts by asking: "Are you sure you want to use this calculator?" It asks again before giving the information, and warns women not to try to interpret it without a doctor's help.

Clyde W. Yancy, who helped develop the American Heart Association's program, says its online tools encourage patients to discuss all issues with their doctors, adding that the Web site includes a section where doctors can click to review the sources of data for options patients are given. Though the American Heart Association is just starting to market the profilers more aggressively, there already have been 20,000 users who have answered patient questionnaires and 3,000 visits to the doctors' section.

"Patients have been going to the Web to ask for answers," says Dr. Yancy, also associate professor of medicine and cardiology at the University of Texas Southwestern Medical Center in Dallas. "We stepped in to provide quality information from well-referenced sources not influenced by anyone -- and germane to each patient."

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