Shortly after her mother was diagnosed with breast cancer in early 2013, Stacey Tinianov went in for her first mammogram. Several days and one biopsy later, she got a phone call that said she, too, had breast cancer.
“I went from my very first mammogram to, ‘you need to have a mastectomy,’ in two weeks,” Stacey said. “And what I was missing were options. I was missing options with context.”
Stacey was told she would need a mastectomy and chemotherapy, and that was that. There was no conversation about alternative options; no information on the effectiveness of different treatments for other young, active mothers. This didn’t sit well, so she pushed her oncologists to give her a test that would indicate whether chemotherapy was necessary (for Stacey, it wasn’t).
Stacey is just one of thousands of people who are treated for cancer every year, each with a unique personal history and a unique treatment experience. These thousands of stories could help other cancer patients figure out what works best for patients like them. But these stories are not adequately captured and shared.
That’s where Cancer Commons comes in. Cancer Commons is at the forefront of a movement to unite the cancer community to determine the best approaches to treatment, according to each patient’s personal history and preferences.
To that end, Cancer Commons recently held its inaugural Pathfinders Conversation Series event. Nineteen physicians, researchers, patients (including Stacey), Cancer Commons team members, and Cancer Commons’ donors (The Pathfinders) came together for an evening in Palo Alto, California, to discuss how to transform the way data is used to help people with cancer.
“We have all this information, but we’re not using it,” said Dick Levy, PhD, Chair of the Cancer Commons Pathfinders Campaign, Lead Director of Cancer Commons, and Chairman of the Board of Sutter Health. “We could improve cancer treatment outcomes by 30% if we simply used existing technology, treatments, and data more wisely.”
Ted Driscoll, PhD, Co-Chair of the Cancer Commons Pathfinders Conversation Series and Partner at Claremont Creek Ventures, agreed.
“You can google things like, ‘where Hillary Clinton went to college,’ you can find out where Kim Kardashian went to dinner last night,” Ted said. “But if you google ‘I just got diagnosed with small cell lung cancer,’ what happens? For something that threatens my life, I can’t get the latest information. It’s behind pay walls that cost thousands of dollars to access.”
William Wong, PhD, Executive Director at Cancer Commons, said, “The Internet has changed every industry, yet patients haven’t significantly changed how they make treatment decisions.”
Granted, cancer research is far from stagnant. Thousands of clinical trials with volunteer patients are testing new, promising treatments every day. The U.S. Food and Drug Administration (FDA) approved 12 new cancer drugs last year.
But only about 3% of adult cancer patients participate in clinical trials, which means most patients’ stories are locked away in medical records. And these records often omit important aspects of a patient’s experience; things like long-term quality of life or personal reasons behind choosing one treatment over another.
That kind of detailed, personal information, agreed Pathfinders Conversation attendees, is what the cancer community should be collecting and making available to doctors, researchers, and patients alike.
Through the MyCancerCommons program, Cancer Commons has begun to encourage people affected by cancer to make their personal stories available to help other patients like them. As Stacey said, this has a great side effect: “When you give patients the opportunity to donate their data, they start to understand more about their own disease.” (Indeed, research shows that patients who are more actively involved in their own care have better outcomes.)
Patients’ self-reported stories could be integrated with existing data from clinical trials, cancer registries, electronic medical records, and other sources, Ted suggested. Big Data analytics could reveal which cancer-care approaches work best for which kinds of patients. Presented in a personalized format, this data could help patients make more informed decisions.
“We have an opportunity to provide information on the best approaches and services available to people who need to make decisions right now,” said Laurence Marton, MD, board member at Cancer Commons. “And by capturing the outcomes of patients’ choices, we can learn from them and improve the information we provide to future patients.”
Of course, the inaugural Pathfinders Conversation was only able to scratch the surface of the cancer data problem. Upcoming discussions will delve more deeply into how the cancer community can collaborate to get smarter about using data.
“I am very excited to be a part of this effort, and I sense that many of you here are, too,” Dick said. “I’m looking forward to many more discussions like this over the next few years.”