For the past 25 years, OncoLink has served as a beacon of light for patients battling cancer, their caregivers, and its survivors, as well as for the clinicians who provide their care. Indeed, it is one of the most trusted sources of cancer information on the web. Last year alone, Penn’s award-winning website had 4.5 million visits. And only half are from this country. “Our top users are the United Kingdom, Spain, India, Canada, Mexico, and Australia,” said Carolyn Vachani, MSN, OncoLink managing editor. They even have followers in Iraq, the Sudan and Yemen! And OncoLink’s Survivorship Care Plan, which is given to patients within the first year after completing treatment, has been printed out more than 100,000 times in more than 133 countries.
“Twenty-five years is an incredible milestone!” said James Metz, MD, chair of Radiation Oncology. “The support from Penn Medicine and the amazing grassroots team that has made this so successful over the years is unprecedented.”
While the site started out as a source primarily for patients and caregivers, as health care has become more patient centered, “more than half our users are nurses looking for reliable material to educate patients,” Vachani said. This includes handouts on medications and managing different side effects, much of it information that not even the National Cancer Institute offers. All information on the site is still written by clinicians who have worked with cancer patients or by survivors. And it is regularly updated to keep up with new developments in cancer treatment, care, and survivorship.
To keep things “simple,” the OncoLink team — which comprises only six full-time employees — have revised the bulk of its patient content over the past two years, using plain-language principles. “A person may be a PhD researcher in biology but that doesn’t mean he would understand a cancer diagnosis and treatment,” Vachani said. The team was trained and certified in plain-language communication to develop materials that better meet literacy standards. And it’s not just how the information is worded but how it appears on the site, with more white space that’s easier for the patient to follow.
And almost the entire site has been translated into Spanish. “There was always some Spanish content but we wanted to standardize the information across the board,” Vachani said, for example, the survivorship care plan, treatment information (such as managing side effects), and teaching sheets about meds… all 260+ of them!
Exceptional quality and depth of information has brought OncoLink national recognition, including the Cancer Patient Education Network’s 2018 Excellence in Patient Education Award as well as being named one of Healthline’s Best Cancer Blogs for the last four years.
OncoLink has been licensing its content for the last several years, allowing them to expand its reach to hospitals around the country and “further our mission to provide education and empowerment to patients and caregivers,” Vachani said.
“A colleague was being treated at Johns Hopkins Cancer Center and shared that her nurses had given her OncoLink materials — even with the Penn Medicine logo,” said Maggie Hampshire, BSN, OncoLink director of Strategic Partnerships. “Nurses know what their patients need and they are using OncoLink.”
Learn more about OncoLink.