Researchers Want Cancer Patients To Share Their Medical Information In Search of Cures

April Doyle, a single mom from Visalia, Cal., only lets herself look three months into her future. Since she was first diagnosed with breast cancer in 2014, she’s tried a new treatment every three months to keep the cancer from spreading from her breast tissue to other parts of her body. But it returned: this time in her bone. She is almost out of options for her hard-to-treat cancer, but she finds comfort in online support groups where other women with metastatic breast cancer share their experiences. “Eventually we know we will exhaust all of our options until they keep coming up with more treatments,” she says. “It’s a scary thing.”

Now, people with cancer can do more than just wait. A new non-profit project from several leading health organizations that launched Thursday, called Count Me In, lets cancer patients send their medical information directly to researchers who are searching for cures.

Count Me In allows cancer patients to send their medical information — including blood, saliva and tumor samples — to a public database that any researcher can access. The tumor samples and blood samples are genetically sequenced, and that data, along with the patient’s medical history (including which treatments patients received and how well they worked), is then translated into an anonymous database. This information is invaluable to scientists who can use it to see patterns that might eventually lead to new understanding of how cancer works — and more importantly, to new drugs for treating it.

So far, 5,500 people — including Doyle, who learned about the project on social media — have submitted their information, and the group hopes to include 100,000 in the next few years.

The project is a collaboration among the Emerson Collective, an organization focused on innovative solutions for social change that was founded by Laurene Powell Jobs, who is Apple founder Steve Jobs’ widow, the Broad Institute of MIT and Harvard, the Biden Cancer Initiative and the Dana Farber Cancer Institute. The Broad, a leading genetics institute, performs the sequencing and for now will store the samples patients send in. People in the U.S. and Canada can send their medical records and samples by signing an online consent form on Count Me In’s website. After signing up, they receive a kit by mail for providing a saliva sample; Count Me In contacts their hospitals to collect medical records and blood and tumor samples. Since it’s not a commercial business, Count Me In’s patient database will not be sold to other entities like pharmaceutical companies, and the project will be funded mainly through philanthropy.

“We wanted to meet patients where they are,” says Reed Jobs, director of Emerson Collective’s Health team and co-chair of Count Me In, as well as Steve and Laurene’s son. “We didn’t want to have a high burden for patients to get engaged, so people can virtually do everything from their couch.”

Jobs, whose father died of pancreatic cancer in 2011, has been discussing the patient-based project with Eric Lander, president of the Broad Institute, for several years and says it appealed to him because of his own experience with his father’s illness. There are few effective treatments for pancreatic cancer, since most patients are diagnosed at late stages. “I don’t want other families to have to go through what we did,” he says. “It was tragic.”

That’s why Count Me In is focusing on rare cancers and those with few reliable treatments — like Doyle’s — to start. “I think aggregating the most information we possibly can about the rarest cancers is really the logical first step for us being able to figure out which patients should go on which treatments, and what new ideas are out there,” says Jobs.

The project is currently building four major databases — for metastatic breast cancer, metastatic prostate cancer, angiosarcoma and gastroesophageal cancer — and people like Doyle have been signing up after learning of the project through social media or advocates in the cancer community. Count Me In plans to add other cancer databases in the future.

Lander says Count Me In is an attempt to take advantage of an underappreciated resource: the data that every cancer patient provides in the form of their tumor’s DNA, their treatment decisions and their outcomes. Currently, patients’ tumor and blood samples are only used to help their doctors make decisions about their individual treatment. But combining that information from the hundreds of thousands of cancer patients who are treated by cancer doctors across the country — not just the ones who happen to live near academic centers — could teach doctors valuable lessons and provide new insights about novel ways to treat the disease. “There has never been a way for the 90-plus percent of patients in the U.S. who aren’t being treated at academic medical centers to be part of research,” Lander says. “All of that information is going to waste about which patients are responding to which medicines and what mutations are contributing to which tumors. This is a sea change in the idea of patients not just as subjects, but as partners.”

Count Me In is not intended to be a resource for changing the medical treatments of the patients who provide their samples, but rather as a repository of data for researchers to access to answer fundamental questions about cancer. Why, for example, does some breast cancer spread beyond the breast tissue, and other breast cancer does not? Are there markers that researches can find to identify women who are most likely to develop metastatic disease? Which treatments work best for which cancers, and why?

“This data may exist at a few cancer centers, but we are trying to break down the silos there and share,” says Dr. Nikhil Wagle, director of Count Me In, who treats cancer patients at Dana Farber and conducts research at the Broad. “But we don’t have a single database that contains clinical, genomic, molecular and patient-reported data.”

Wagle and the project’s associate director, Corrie Painter, a cancer researcher at Broad, have been reaching out to patient advocates to spread the word about the opportunity for cancer patients to contribute their medical records to cutting-edge research. The ability to contribute to finding such answers is what attracted Doyle to sign up. “We are the ones screaming from the rooftops for help,” she says. “Of course we want to be a part of it if we can.”

When she was first diagnosed with breast cancer, Doyle had genetic testing of her cancer. But her doctors told her she was part of 11% of people for whom they can’t explain why they developed the disease; she had no known genetic mutations to explain her cancer. “This project makes you feel like maybe they can find the why,” she says.

Barbara Bigelow, who was also diagnosed with metastatic breast cancer, is motivated by the same desire for answers. The Massachusetts resident was diagnosed with stage 2 breast cancer in 2001 and had a lumpectomy, chemotherapy and radiation. In 2015, she learned her cancer had spread. Her two sisters were also diagnosed with the disease, so they all received genetic testing. But none of them carry any of the genes known to contribute to breast cancer. “We may have a gene that has not yet been discovered,” Bigelow says.

Bigelow has two daughters who, because of their family history of breast cancer, have a high chance of developing the disease themselves. But if researchers could find any genetic hint that they will get the disease, that could steer them toward early and more effective treatments — one of the goals of Count Me In. “My hope is that by participating now, researchers will find some key to making metastatic breast cancer a chronic disease and not a terminal one,” Bigelow says. “And that my daughters could be saved because of my participation.”

Her medical experience is also valuable to future metastatic breast cancer patients for another reason. Because she lives near the Dana Farber Cancer Institute in Boston, in 2016 she joined a clinical trial that was testing the combination of a recently approved immune-based drug and chemotherapy. The therapy took a toll — her immune system reacted so violently that she was hospitalized for two months and put into a medically induced coma as her kidneys started to shut down. After she recovered, however, her cancer had started to shrink, and two years later, she has no active signs of cancer.

Doctors are eager to study her genetics and her tumors to better understand why her cancer responded to the immunotherapy combination, and how more people like her with metastatic disease can benefit.

Patients with other types of cancer also stand to benefit from Count Me In’s democratic collection of patient information. Already, by scanning records provided from the few hundred people with angiosarcoma, a rare cancer, scientists have found a tantalizing hint for an effective new treatment. Two of the people who have sent in their samples were treated by doctors with immunotherapy in a practice known as off-label use, in which physicians can use medications approved for one disease to treat another. After the team at Broad sequenced the tumors from these patients, they found that angiosarcomas have a high number of mutations — something that doctors treating the disease hadn’t known for sure, since so few people are affected and so few have their tumor DNA sequenced. For immunotherapy, having lots of mutations is a good thing: it makes the cancer cells more vulnerable to some of the immunotherapy drugs that expose cancer cells to attack by the immune system.

In less than a year, that finding has led to new studies that are enrolling people with angiosarcoma; these patients will test the immunotherapy to determine the best dose and timing of the treatment. “That shows patients that, yes, if you do donate, it will benefit patients,” says Jobs. “It’s been a real eye-opener.”

Tracey Noce, a designer at Disney in Los Angeles, also donated her medical records to help others with angiosarcoma. “Cancer can be very isolating, especially if you have a rare cancer,” she says. “Count Me In is really empowering, because as a patient you can say, ‘If my tumor can help somebody please, please, please take it.’ Nobody should have to feel like there are not any answers and that they are going to die.”

When Noce was told there weren’t many treatment options for her, she did her own research on which experimental therapies might be promising. She found a French study showing some encouraging results with the chemotherapy drug Taxol, which is generally used to treat breast cancer. After discussing it with her doctor, she began getting Taxol and has had no evidence of disease since 2009. Her records could help researchers better understand if Taxol is a feasible new treatment for her cancer, and if not, she’s hoping other people’s records in Count Me In will inspire new studies of potential new treatments she could try, since angiosarcoma has a 50-50 chance of returning even after remission.

Noce, Doyle, Bigelow and other people with cancer who are joining Count Me In are aware that they are donating their information not to find a treatment for themselves, but for future generations. An app that Jobs and his team at Emerson developed will alert them when researchers are accessing the metastatic breast cancer or angiosarcoma database to which they contributed, but they may never know if their information led to a new treatment or insight that saves lives. And that’s okay with them. “My information that I’ve given them is going to be there long after me,” says Doyle. “I don’t know what the next three, six or nine months will bring. But I know that they have my information, and hopefully it will help researchers to come to some kind of resolution at some point. It’s not about me; it’s about the big picture. It’s about all of us.”