Facebook Twitter



Daniel Shostak's first move after learning he had Hodgkin's disease was to call his family and his friends. His next stop was the Internet.

First, he revved up his favorite search engine and keyed in the word "cancer." His screen called up thousands of articles. Next, he tried "lymphoma," then "Hodgkin's disease," as he refined and narrowed his search.Today, six months later, Shostak, 35, a Pittsburgh native now living in Virginia, regularly tracks abstracts and newly published research studies on his condition through the Internet. He also gets free e-mail messages from a university-based list service whenever a clinical trial is started or a new drug is approved.

He sometimes finds out about them before his physician.

Estimates are that health-related Internet websites double in number every 60 days, a rate of growth that makes any directory outdated as soon as it's published. It means that just about anyone with a modem and a terminal can find information ranging from chat groups to technical research on nearly any disease. And more and more people are taking advantage of it.

Bill Tomer of West View, Pa., for instance, followed that track when his parents became ill. With his father's illness, Tomer said, the electronic information helped family members ask better questions when they met with his physician. In his mother's case, the family decided to change doctors based on what they'd learned on the Internet.

"You find out what questions to ask, and you find out which answers (from the physician) are way off base," Tomer said. "When the doctor told us he didn't need to do a biopsy, we knew that was just wrong."

In wading through the galaxy of websites, Shostak and Tomer have an advantage. Tomer, 35, is a software engineer whose work regularly puts him on the Internet. Shostak is program manager for the Institute for Alternative Futures, a Virginia-based research organization co-founded by "Future Shock" author Alvin Toffler. With master's degrees in public health and public policy, he lectures on how the emerging information age will affect health care.

But even those without daily Internet exposure are stepping out onto the Internet trail.

Noted brain cancer surgeon obert G. Selker of the Western Pennsylvania Hospital first noticed the difference late last year when he began receiving patients' electronic mail inquiries about his research - from Germany. Another patient showed up at his office with printouts of more than 150 studies, all of them downloaded from the Internet.

"Patients are coming to us and asking us about various treatments they've picked up on the Net. `What do you know about this? What do you know about that?' If the patients themselves don't have access to the computer, their friends do."

Selker sees the explosion of information as a good thing for patients. "The patients are empowered by this. They are released from the hold that a single doctor, or institution, would have on them. I look at it as the emancipation of the patient."

Selker recently agreed to participate in an Internet "virtual clinical study" on brain tumors.

With patients' consent, their medical information and treatment is entered into a central database and their progress is followed. The study does not prescribe a certain treatment; it merely tracks what treatment they're getting and how they respond to it.

The study "may turn out to be `virtual junk,"' Selker said, but with little cost or time involved, and the prospect of getting information on thousands of brain tumor patients, the gamble seems worth it as long as patient confidentiality can be protected.

But Internet users don't need a medical degree to find medical information they want.

One of the newer options is America's HouseCall Network, which went on line in May with an array of information on common diseases, wellness and nutrition. Network officials say Internet users make 40,000 house calls a day to their World Wide Web site.

Another is the Heart Information Network, started by Andre Pilevsky of Summit, N.J. after he developed heart disease in his early 30s.

All this information "is a great thing," Shostak said - but a great thing that carries some peril.

Shostak's concerned that the information will not be available to everyone, widening the gap between the knowledge haves and have-nots. He also worries about protecting patient confidentiality as well as other as-yet unknown problems that go with the unprecedented glut of information.

"It's really quite overwhelming in terms of the numbers of sites out there."

Even an Internet enthusiast like Selker admits to mixed feelings about the information explosion.

"I think it's good that the public have access to information so they can become educated as to what's available. On the other side, I don't think patients have enough knowledge to assess what's being given to them. I don't know if they can interpret it."

He and others wonder, too, what will happen when better-informed consumers mesh with managed care plans that favor a narrower range of standardized treatments.

A key for everyone will be evaluating just how good the Internet source is.

Tomer and Shostek agree there's plenty of questionable, and even wrong, information available. "You can get very lost," Tomer allowed. He also advised that families use the information to help, rather than challenge, a physician.

"The informed patient is a better patient," he said. But, he added, "once you have trust in your doctors, you should do nothing to undermine that."

(Distributed by Scripps Howard News Service.)

hdfbSome places to find medical advice on the NetFifty years ago, the remedy for what ailed you might have been a neighbor's homemade recipe passed over the backyard fence.

Today, with a computer and modem, global choices for health tips and medical advice lie a few keystrokes away. Here are a few of them:

- The National Institutes of Health (http://www.nih.gov) opens up access to the 24 federal institutes, centers and divisions that make up the NIH, plus the U.S. Public Health Service and the Department of Health and Human Services. For example, the National Library of Medicine site has abstracts from the XI International Conference on AIDS. Databases on other diseases also are available. For a small fee, they will search the Library of Medicine's Medline medical database through the Grateful Med site.

- Healthy Net (http://www.healthy.net) is the Health World Village and its library, wellness center, fitness center, nutrition center and public health center. Topics include information on "conventional and alternative therapies."

- Consumer Health USA (http://www.medscape.com) features "thousands" of peer-reviewed clinical articles and free access to the Medline medical abstract database.

- The Centers for Disease Control's Morbidity and Mortality Weekly Report (http://www.cdc.gov/epo/mmwr/mmwr.html) posts alerts on current disease outbreaks and other health information;

- Chicago-based ORBUS in May launched America's HouseCall Network (http://www.housecall.com), which can provide detailed information on diseases, medications and tips on finding a family physician. ORBUS officials say the new Web site is getting 40,000 hits daily.

- Heart Information Network (http://www.heartinfo.com) provides information for heart disease patients or those who fear they are at risk for heart disease. Started by a New Jersey man who developed heart problems in his early 30s, the site features heart information news, frequently asked questions about heart disease and tips for reducing your risk. You can ask your own questions, and there is also a selection of first-person patient stories.

- Avicenna Systems Corp. of Cambridge, Mass. has just introduced what it describes as a "supersite" for medical information (http://www.avicenna.com). It is meant for medical professionals, but patients can still get free, unlimited access to pharmaceutical databases, the federal electronic database Medline, plus information on professional associations and clinical trials.

Several of these, including Medline, were still unavailable as of last week.