Seventeen years ago, Cancer Commons founder Marty Tenenbaum learned he had melanoma. He leapt into action. He wanted the best treatment options he could possibly find.
“When you’re diagnosed, you’re put into this strange new world with no guidance,” Marty said. “You hit the search engines, and you’re just overwhelmed with information that’s mostly irrelevant, incomprehensible, or out of date.”
Fortuitously, a friend happened to send Marty a paper that described a promising experimental treatment. It involved surgery followed by an immunotherapy drug to keep the cancer from coming back. He had the surgery, enrolled in a clinical trial to receive the drug, and has been NED (no evidence of disease) ever since.
“I was lucky to have someone suggest that paper,” Marty said. “The truth is that lots of lives can be saved without any new drugs, or even any new knowledge, by just making sure that everybody knows what we collectively know.”
Now, an upcoming app called Cancer Maps aims to spread that collective knowledge. Built by Cancer Commons, it will be an interactive, visual roadmap to help patients and their physicians navigate treatment options.
William Wong, PhD, Executive Director of Cancer Commons, announced the new Cancer Maps initiative to 50 physicians, researchers, patients, and donors gathered for the inaugural Pathfinders Signature Reception last month in Portola Valley, CA.
“People are dying needlessly because critical information is not available in a simple, understandable form,” William told the audience. “Cancer Maps will organize the world’s collective cancer knowledge in a way that is accessible to all patients, regardless of their experience or level of engagement.”
A patient who uses Cancer Maps will enter his or her diagnosis, treatment progress, and personal preferences. Cancer Maps will then display a personalized roadmap that shows what works and what doesn’t for patients like them.
Cancer Commons will build the foundations of the roadmap using information from three major sources: 1) standard guidelines that doctors use to make treatment choices, 2) research results and data, and 3) data from other patients who have shared their personal treatment experiences. The roadmap will be paved with expert-verified treatment details, associated side effects, recent news, and descriptions of relevant clinical trials.
“As more patients join, they can start to provide input on what is relevant and interesting for other patients,” William said. “It’s about engaging patients; allowing patients to actually find out from others like them what they think of specific treatments.”
And as patients, physicians, and researchers add more data, Cancer Maps will evolve. Existing treatment pathways may split and new trails may appear, representing the ‘off-road’ experiences of pioneers trying off-label and experimental treatments.
“Cancer Maps is a no-brainer,” said Dick Levy, PhD, Chair of the Cancer Commons Pathfinders Campaign, Lead Director of Cancer Commons, Chairman of the Board of Sutter Health, and host of the Pathfinders reception. “I’ve been in the cancer business 46 years, and what I see Cancer Commons doing is something nobody else has done until now.”
Other speakers at the event confirmed the need for Cancer Maps.
“What I needed as a breast cancer patient, as a 40-year-old with two kids and a husband, was a treatment map,” said Stacey Tinianov, breast cancer survivor and patient advocate. “I needed it on my smart phone, I needed it to tell me where the construction sites were, where the accidents were, and where traffic was moving well. Cancer Maps is exactly what I asked for.”
Elliott Fisher, MD, MPH, Director of The Dartmouth Institute, was particularly interested in how Cancer Maps might incorporate patients’ preferences; something he said many oncologists, “basically don’t think about.”
“People have different goals, preferences, and values in their lives,” Elliott said. For example, he said, the choice between different breast cancer surgeries should take into account how a woman feels about her breasts. “We fail to deliver the care that patients really value. I think Cancer Commons has the right answer.”
Other attendees said that Cancer Commons faces a major challenge in gathering data from doctors and researchers and communicating the knowledge that arises from it. However, they agreed that it must be done.
“We have the good fortune of entering an era now where we have enormous volumes of data…bringing it together is really important for empowering people to understand what their options are,” said Buzz Stewart, PhD, Vice President and Chief Research & Development Officer for Sutter Health. “It’s on Sutter and healthcare systems like ours to figure out how to unlock these data.”
Sally Glaser, PhD, Director of the Greater Bay Area Cancer Registry, voiced hopes that Cancer Maps would reach all patients who could benefit from it. “Cancer affects people of all races, ethnicities, and socioeconomic levels,” she said. “[This raises] some considerable challenges for understanding the needs of, and communicating effectively with, that wide range of individuals.”
The need for Cancer Maps was perhaps best expressed by Cindi Cantril, RN, OCN, CBCN, MPH, Director of Oncology Service Lines/Patient Navigation at the Sutter Pacific Medical Foundation. Her job entails telling people they have cancer, then guiding them through the entire treatment journey to ensure they have the support they need.
“I get it, I know what Cancer Commons is doing,” Cindi said. “And I’m very excited about it because patients are lost, they’re terrified, and we’re asking them to make huge decisions about the rest of their life, in a short period of time.”
A pilot version of Cancer Maps will soon be launched for breast cancer, with the goal of integrating it into at least one healthcare institution to show how it can help patients in a clinical setting.
Ultimately, Dick said, Cancer Maps, “has the potential to save literally millions of lives and improve millions of treatments in a very short period of time.”