PERSONAL HEALTH
Navigating the Net Wisely in a Health Crisis
By JANE E. BRODY
Published: October 3, 2011
Andrew Schorr, a specialist in health communications, is convinced that the Internet saved his life. Now, through a book he wrote with Mary Adam Thomas, “The Web-Savvy Patient,” he is trying to help others facing a medical crisis use the Internet to their advantage and avoid its potential pitfalls.
Yvetta Fedorova
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In 1996, at age 45, with two young children and hoping for a third, Mr. Schorr had his life turned upside down by a diagnosis of chronic lymphocytic leukemia, an incurable disease. Cancerdoctors in Seattle, near his home in Mercer Island, Wash., told him he needed immediatechemotherapy.
But before he took their advice, he went on the Web and found a community of patients with his disease. The name of a specialist in Houston, Dr. Michael J. Keating, appeared repeatedly in their messages to him.
Soon, he and his wife, Esther, were on a plane to Houston. Dr. Keating told them that Mr. Schorr would be around for a long time and that they should go ahead and have the third child they wanted. The doctor also said no treatment was needed until and unless Mr. Schorr’s condition began to progress, which it did four years later.
For six months in 2000, Mr. Schorr was treated with a combination of standard chemotherapy for leukemia and an experimental medicine, a monoclonal antibody called rituximab (Rituxan), which has kept him alive and well to this day. That third child, Eitan, is now a 14-year-old high school football player.
“Had I taken the original advice I got in Seattle, I never would have been eligible for Dr. Keating’s treatment,” Mr. Schorr told me. “And we probably would not have had Eitan.” His two older children, Ari, 21, and Ruth, 18, are now in college.
“Many doctors warn patients that they have to be careful of health information on the Web,” Mr. Schorr wrote in his book. “That is true. But patient-to-patient connections online have helped me, and they can help you, too. So can online connections with medical experts and medical information. You just need a helping hand from a savvy guide to help you navigate the Web.”
It is just such a no-nonsense guide that he and Ms. Thomas have provided. In it, they discuss the kinds of useful information that can be gleaned online, at no cost, by anyone with a serious medical condition, and they describe the hallmarks of bogus advice and commercially sponsored information that may or may not be helpful.
After his diagnosis, for example, Mr. Schorr began by going to the Web sitewww.ACOR.org (for the Association of Cancer Online Resources), where he found a community of patients with chronic lymphocytic leukemia, a blood cancer that can remain quiescent for years, then suddenly progress.
“First, I lurked. I watched the players,” Mr. Schorr said in an interview. “Then I began asking questions about treatment and looked for responses. Several people gave the same responses, suggesting that I contact Dr. Keating.” Mr. Schorr learned that the doctor is one of the world’s leading experts in his disease.
Online Patient Communities
In their book, the authors warned that in searching for reliable information, Web users have to be discerning and think like consumers, not patients, to avoid scams and commercially motivated advice. “The Internet’s greatest strength is also its greatest flaw: Anybody can post just about anything on the Web,” they wrote.
“You need to screen out ‘I did this and you should too’ kinds of advice,” Mr. Schorr said. “Medicine is changing too fast. The Internet can help you know which way the wind is blowing: what’s new, who are the experts, where to go.”
The authors also warned against claims that someone has lifesaving information that the medical establishment “doesn’t want you to know about.”
A good place to start would be patient advocacy groups affiliated with national nonprofit health associations, like the American Heart Association or the Muscular Dystrophy Association. Online patient communities exist for virtually every major illness and quite a few that are relatively obscure. For people concerned about privacy, real names do not have to be used when posting messages.
In addition to finding the best available therapy, online patient communities can help people with problems associated with various health conditions and their treatments — for example, “chemo brain,” the mental fogginess and memory problems that can result from chemotherapy.
“The doctors don’t talk about this, but people with it do,” Mr. Schorr said, and those people can help others understand what’s happening and how best to cope with the problem.
“What you get online can help you can frame issues that you want to talk to your doctor about,” he said.
Establish an Electronic Record
When dealing with a serious or chronic illness, it can be very challenging to keep track of every test, treatment, dosage and complication, as well as the contact information for every health professional concerned with your care. One of the most valuable pieces of advice in Mr. Schorr’s book is to establish an electronic personal health record.
Among its advantages: having a permanent record of everything that was done to date and its consequences; giving different doctors instant access to vital information about your condition; avoiding needless repetition of costly, hazardous or inconvenient tests; maintaining contact information for all members of your health care team; and having a centralized source of everything important about your health.
The information recorded can include lab test results and diagnostic images; a list of emergency contacts; your health insurance information; a medication log of drug names, dosages, dispensing pharmacies and dates, and your immunization records; links to useful online patient communities and reliable medical information; personal entries about your reactions to tests and treatments; copies of your living will; and contact information for your chosen health care agents.
Nor do you have to be sick to establish such a record. Christy Schulz, 43, a wife and the mother of two school-age children in Hudson, Wis., was struggling to keep track of the family’s medical records through three major moves in 10 years. Through a record-keeping system offered online by the Mayo Clinic (powered by Microsoft HealthVault), Ms. Schulz was able to store all the relevant health information for each member of her family.
“It’s all about peace of mind, knowing there’s only one place I have to go and I can get at it from any computer,” Ms. Schulz told the authors. The information proved especially useful when her daughter Avery’s early-in-life struggle with asthma recurred some time later. Ms. Schulz decided to show Avery, 13, how to log on to the site and take an active role in her own health.
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