Heather and Rich Badt in the summer of 2023
When Heather Badt and her husband learned within a week and a half of each other that they both had cancer, she felt like she had another question every hour.
Badt knew she and her husband were in good hands at the Abramson Cancer Center at Penn Medicine, but there were so many challenges to navigate outside of their treatments for breast and esophageal cancer, respectively. How would they frame the conversation with their then 10- and 13-year-old children about the changes soon to occur in their house? Following Badt’s husband’s esophagectomy, what foods he might be able to tolerate? When the words “palliative care” came up, Badt needed to know if the term was as scary as she thought (it wasn’t, and her husband was going to be OK.)
“There were all these different components beyond what is the cancer or what is chemo—like all the symptoms and side effects that were impacting our quality of life, and mental health pieces we were experiencing—those were our real day-in and day-out needs,” Badt said. “The doctors were amazing and took time with us to answer our questions, but plenty of other ones came up in between appointments.”
Badt turned to the Internet with her nagging but non-emergency queries. She noticed one site often appeared high in the search results: Penn Medicine’s OncoLink (OncoLink.org), a massive library of patient education that seemed to have answers to every possible question.
30 years of reliable cancer information
The OncoLink team
Celebrating 30 years this spring, OncoLink’s mission has always been “to be the premier website for cancer information,” available when and where it’s most useful to patients and providers, said James Metz, MD, Penn Medicine’s chair of Radiation Oncology and OncoLink’s executive director.
Even with the best care team, it’s normal for patients with cancer to feel confused, anxious, and overwhelmed, starting from the early days when they’re waiting for that first appointment with an oncologist to learn more about their condition. And the Internet can be helpful or harmful when it comes to health information.
The nine-person OncoLink staff takes pride in the fact that all site content is created and vetted by Penn oncology professionals who know what patients need at every stage. From risk assessment through treatment to survivorship, the team aims to arm patients and caregivers with the information needed to make educated treatment decisions and take an active role in their care. It’s one way that Penn Medicine is supporting cancer patients beyond their treatment.
“Patients are scared, and they don’t know what’s going on,” Metz said. “Based on the stories we’ve heard over the years, OncoLink has gotten them information at their fingertips when they needed it and helped them through difficult times.”
While Badt’s treatment for triple negative breast cancer was fairly routine, she had plenty of ongoing questions about how to support her husband through his surgeries, diet changes, side effects, and complications. She returned to OncoLink again and again, drawn to the breadth and depth of topics; the up-to-date information; the connection to Penn Medicine and the fact that health care providers, not just patients, were using the site.
“It was very helpful for what was happening that day,” said Badt, now chief operating officer of the global nonprofit Cancer Support Community, where she often tells patients about OncoLink. “Knowing that it was aligned with Penn made me feel confident … and I knew that the people creating the materials were talking and working with patients.”
Patient education for anyone, anywhere
In early 1994, Joel W. Goldwein, MD, then a Penn Medicine radiation oncologist who “had always been a tinkerer,” had the idea to provide cancer information directly to families and clinicians through the burgeoning Internet. The first post went up on March 4, 1994, and within months, without much promotion, tens of thousands of visitors from around the world were coming to the site. OncoLink was the world’s first cancer information website for patients, caregivers, and health care providers, and would outlast many other medical sites through the years.
“It was always meant to help patients everywhere,” said OncoLink Innovation Director Carolyn Vachani, MSN, RN. “Not everyone can come to Penn, but everyone should have access to good information.”
Goldwein later left Penn but has stayed on OncoLink’s editorial board as founding editor.
“I think it’s amazing that we’ve reached people from all over the world, from our little corner in Philadelphia, and that we can provide this information for free to anybody who needs it, whenever they need it,” Goldwein said in a recent conversation with Vachani. The site has had 4.7 million unique users from 230 countries.
Since the early days, OncoLink has used technology to evolve in service of patients and providers. In 2007, the OncoLife Survivorship Care Plan—a tool that took a year to build and code—launched to help cancer survivors learn about prevention and monitoring for long-term and late after-effects from their treatments, customized according to their medications and other treatments. (As of early 2024, it had been used to create over 122,000 survivorship care plans.)
By 2020, as health care had become more patient-centered, over half the site’s users were nurses looking for reliable material to educate patients. In response, the OncoLink team had an app built inside PennChart so that Penn Medicine staff can pick whatever handouts they want to share, and the information is seamlessly added to the patient’s online portal.
That means these days, patients like the Badts don’t even have to search for the information.
Cindy Briola, RN, OCN, CBCN, a radiation oncology nurse at Pennsylvania Hospital, uses the OncoLink app every day to pull articles she thinks will be helpful for her patients, whether they are coming in for their first appointment or already receiving radiation. She’s able to select articles based on the patient’s condition and stage of treatment, and they can either be saved to the patient’s portal or printed in a booklet to take home.
“If it’s a head and neck cancer patient, I’ll pull an article about the plastic face mask they will wear, and another one related to the claustrophobia and anxieties related to that. I’ll include one about radiation tattoos. I’ll pull in general resources for oncology patients and then site-specific resources related to head and neck cancer, like the importance of good dental care and symptom management,” Briola said. “There are articles related to every possible patient condition or question I can think of, and having the tool right in their chart saves me the time having to search for the information.”
Evolving to meet patients’ needs
Looking ahead, the team is thinking about how to deliver more personalized content to patients, through artificial intelligence, to make it even easier for patients to receive the information they specifically need, Metz said.
“People don’t necessarily want static content. They want content customized for them,” Metz said. “After 30 years, we’re still innovating, doing novel stuff, and I’m excited about where this goes in the next 30 years. I have no doubt we will continue to lead the way.”