By: Sally Sapega
Photos Courtesy of Tom Leung Photography
When OncoLink was launched in 1994, the Internet was uncharted territory. In fact, as OncoLink editor James Metz, MD, of Radiation Oncology, told those attending last month’s 20th anniversary celebration, “most people didn’t even know what the Internet was.” Indeed, in 1994, there were about 30,000 domains on the Internet. Today, that figure stands at nearly one billion!
But Joel Goldwein, MD, adjunct professor of Radiation Oncology, who created Penn’s award-winning cancer website, had “tremendous vision,” Metz said. (Goldwein is now an executive at Elekta, a health-care technology company.) “Joel told Penn’s leaders at the time, ‘We can connect people with this, build a community.’’ And he was right. OncoLink was an instant hit. The first month it received over 30,000 hits.
Today, OncoLink remains one of the most trusted sources of cancer information on the web. It reaches two million new users a year. The National Library of Medicine has consistently named the site one of its top 10 cancer websites.
“We’ve educated over 40 million people in the last 20 years,” Metz said. “That’s an amazing accomplishment. I challenge any one to find another project that has touched the lives of so many people.”
Providing Information People Want and Need
OncoLink started out as a source of links to other cancer information on the web, but soon after its debut, its team of doctors and nurses began writing their own copy for the site. The current OncoLink team still follows that approach. “All of the information is customized for OncoLink, written by practitioners and experts in the field,” said Maggie Hampshire, BSN, OCN, OncoLink’s managing editor, who oversees the site with Metz and Carolyn Vachani, MSN, OncoLink’s nurse educator. Today’s volunteer contributors come from many professions, including physicians, nurses, social workers, dietitians, and physical and occupational therapists, as well as cancer survivors.
“The information on OncoLink is provided by people who work with cancer patients every day or have been there themselves,” Vachani said. “They know what people want and need to get through the experience. This is what sets us apart from other cancer sites.”
Although OncoLink has received financial support from industry, the money has always come “with no strings attached,” Hampshire said. “We have never allowed others to have editorial control over our content.”
Over the years, OncoLink’s ability to stay ahead of the crowd has rested not only on the type of information it provides but also how it’s provided. For example, the original “Ask the Experts,” in which the team provided answers to emailed questions, morphed into webchats. “People want instant responses to their questions today,” Hampshire said. Vachani and Hampshire pull together the monthly discussions, each of which features experts speaking and answering questions on a common concern for cancer patients. People can watch the chats live or can watch videos online at any time.
When nurses (who represent nearly half of the site’s users) told Vachani that finding and printing out all the information they wanted for patients was time consuming, the team created OncoLink’s Treatment Binder. “Nurses simply click on the Treatment Binder link and check off all the information they want to give the patient. OncoLink pulls it together and prints it as one document,” Vachani said.
And the increase of people using mobile devices to surf the web led to a new responsive web design, Hampshire said. “People often missed features that weren’t readily visible on very small screens. Now the site automatically resizes to any size screen.”
The Future of OncoLink
OncoLink will continue to move ahead, Metz said. “We’re looking at ways to provide more personalized information for individuals, not just general content.”
The team also wants to spread OncoLink’s information beyond its site by “populating other sites with our information, ” Metz said, for example, by providing content for pharmaceutical companies or equipment manufacturers. “Many companies use copy written by ad agencies or marketing but it’s not always patient friendly,” Vachani said. “People are not getting the oncology content they want and need, at the right level.”
They’re also working on integrating the OncoLink customized survivorship care plan program with EPIC so it would automatically populate a patient’s medical record rather than requiring the care provider to fill out the entire questionnaire. This customized plan helps survivors and their health-care providers overcome the medical and psychosocial problems that may arise post treatment.
At the 20th anniversary celebration, Metz presented Goldwein with the OncoLink Visionary Award. Goldwein noted that getting OncoLink up and running 20 years ago was truly “a team effort. So many people worked very hard to get it going.
“You don’t do something like this because you’re paid to do it,” he continued. “You do it because it’s a passion of yours.” Clearly the passion is still there.
Thinking Outside the Box
OncoLink was ahead of its time when it was launched in 1994 and it has continued to take the lead and think outside the box over the past 20 years. OncoLink was the firstcancer website to:
- Provide same-day reporting from professional meetings for physicians.
- Use an online, IRB-approved electronic consent form for a study.
- Be translated into Spanish (in the U.S.).
- Have a clinical trials matching program.
- Develop a personalized cancer survivorship care program.
- Create a cancer risk assessment tool encompassing all cancers.
Originally published in April 4th edition of HUPdate, a University of Pennsylvania Health System internal publication.