Daily quiz will yield information on your cancer risk

University of Pennsylvania radiation oncologist James M. Metz is editor in chief of OncoLink.org.
University of Pennsylvania radiation oncologist James M. Metz is editor in chief of OncoLink.org.
Posted: April 02, 2012

In early 1994, some University of Pennsylvania oncologists launched a website with cancer information for professionals, patients, and the public.

OncoLink.org's creators weren't just early adopters; they were pioneers. The Internet was in its infancy, with painfully slow dial-up access, primitive search engines - and not much for those engines to find. Even the American Cancer Society, the National Cancer Institute, and dot-coms such as WebMD and Medscape would take another year or two to establish a Web presence.

In an article recalling Medscape's first five years, founder Peter Frishauf said searching for online medical information in 1995 turned up little that was worth reading, with a few exceptions. Penn's OncoLink, he wrote, was "notable from the start."

James M. Metz, the website's editor in chief, began writing for it in 1996 as a physician-in-training in radiation oncology. He continues to practice medicine and write about it, as do all of OncoLink's hundreds of volunteer contributors.

"What makes us unique is that the content is from health-care providers based on their interaction with patients. Most sites employ medical writers," Metz said. "We also let our users drive the site ; we get a couple hundred questions a day."

OncoLink has about 150,000 unique visitors each month - not bad for a site with virtually no marketing. Since 2005, when OncoLink debuted a Spanish translation of the site, the number of Spanish-speaking visitors has grown to more than half a million a year.

Erika A. Waters, a social psychologist at Washington University in St. Louis, studies how perceptions of cancer risk influence people's behavior. She first discovered OncoLink in 2003 as a graduate student at Rutgers University.

Its longevity and growth are "impressive," she said. "They've done a good job of updating in terms of Web design and interactivity."

Monday, OncoLink is partnering with The Inquirer on a new feature, a cancer quiz. Each day for the next month, you can go to the health Web page of The Inquirer, philly.com/health, and find a true-false question - and answer - designed to dispel common misconceptions about the risk of cancers, including melanoma, cervical cancer, lung cancer, and breast cancer.

Family history is a big source of confusion with breast cancer, said Carolyn Vachani, OncoLink's nurse educator. Many women assume they are automatically at high risk because a relative had breast cancer, while others assume a lack of family history puts them at such low risk that they need not get screening mammograms. Both are wrong, Vachani said.

The quiz complements OncoLink's online "What's My Risk" survey, one of many risk assessment tools now on the Internet. Users fill out a questionnaire about lifestyle and demographics - age, diet, smoking, exercise habits, and so on - then receive a report with general advice for reducing risk, plus links to more information and resources.

"Eating white bread, white rice, and processed grains may increase your risk for colon, rectal, and endometrial cancers because of their link to obesity," the survey told this carb-loving reporter. "Try replacing these foods in your diet with whole grains and brown rice."

OncoLink's editorial board purposely chose to provide fairly generic advice rather than an individualized risk estimate.

"Our feeling was, it doesn't really matter what the actual number is; what matters is what you do about it," Vachani said. "A lot of these other calculators tell you what your risk is, but not what to do next."

OncoLink offers several other free interactive tools, as well as video and audio resources:

* The Livestrong Care Plan, developed in cooperation with the Lance Armstrong Foundation, provides a road map for adult cancer survivors. The information covers potential late effects of cancer treatment, ongoing cancer screening, psychosocial effects, financial issues, genetic counseling, and referrals for follow-up care and support

* The clinical trials matching service, accessible by phone as well as online, provides cancer patients with a tailored list of research studies across the nation for which they may be eligible.

Professionals, as well as patients, can use OncoLink to get the latest information on medical practices, scientific meetings, even teaching guides for students at all levels.

Today, 18 years after OncoLink blazed a trail in cyberspace, it is up against a tsunami of medical websites. Does it still fill a need?

Waters thinks so. She said that despite the plethora of sites, studies show that quality and reliability vary, leaving consumers to wonder, "Are they trying to sell me something? Are there conflicts of interest?"

Metz echoed, "There's such a need for trusted information on the Internet. Anybody can put stuff up. Having Penn behind us is critical."

Contact Marie McCullough at 215-854-2720, mmccullough@phillynews.com or @repopter on Twitter.

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