Nearly 40% of men and women will be diagnosed with cancer in their lifetimes, with about 1.7 million of those cases expected in 2016 in the United States (according to the National Cancer Institute). These patients are hoping for better treatments and, hopefully someday, cures. They could also be valuable resources, helping experts develop better therapies, if only staff at research centers like Dana-Farber Cancer Institute in Boston could study their unique cases. Even patients with the same diagnosis, such as breast cancer, have different genetic makeups, both in their healthy cells and in their tumors. These differences provide clues to new genetic factors that may cause the disease, why some patients respond especially well to certain treatments, why some tumors are so resistant to treatment, and how people of different ages or ethnicities are affected.
"A very small fraction of adult cancer patients in the U.S. gets seen at these big centers, probably less than 15%," says Nikhil Wagle, an oncologist at Dana Farber specializing in breast cancer. "The vast majority…get treated in community hospitals where they get clinical care, but their tissue [sample] goes to the pathology department and sits there."
It's a classic "long tail" problem: There's a large community of people, but they are spread out. So Broad Institute/Dana-Farber Integrative Cancer Biology Program in Cambridge, Massachusetts, formed the Metastatic Breast Cancer Project to find a long tail solution: Find people on the Internet. "The traditional way is that when a patient is at [a research] institution, someone will approach them and ask them in person," says Wagle. "We're trying to complement that by doing this 21st century, go directly to patients." That strategy has already netted about 1,700 people (both women and men) with metastatic breast cancer—cancer that has spread beyond the breast, threatening other parts of the body. Wagle says that 95% of them have provided some information about their condition, and that more than 900 have agreed to share medical records, tumor samples, and saliva (for genetic sequencing). Those are huge numbers for the coalition's first study project, just launched in October 2015.
This is not a "build it and they will come" approach. Sending out a tweet and creating a hashtag isn't going get people to come flocking (although the team has also done that, at @MBC_Project and #mbcproject). "I've seen a lot of other people trying to do research studies or recruitment efforts in the space of social media just by launching something without patient input, and they haven't been necessarily as successful," says Corrie Painter, a cancer researcher and Wagle's partner on the project. Instead, they spent a year finding allies. "We built a lot of in-person support among movers and shakers in the metastatic breast cancer community," says Wagle, "people who have blogs or highly followed Twitter feeds or had their own Facebook pages." Early supporters included the Metastatic Breast Cancer network; and the project now has 15 support organizations.
Painter already had personal experience with online support networks. "I'm six years out of a very rare cancer called angiosarcoma," she says. "I currently don't have disease, but it's a highly aggressive, very rare, understudied cancer." Angiosarcoma, which affects the inner lining of blood vessels, will be the next outreach project, expected to launch at the end of the summer. It's a perfect candidate because it is so rare: It takes the power of the Internet to find enough patients for a meaningful study.
In dealing with and advocating for her condition, Painter has worked through the Angiosarcoma cancer group on Facebook. "As I build this study, I am building it out with them," says Painter. "When it comes from the patients themselves, it's so much more powerful." She was a postdoc at UMASS Medical School studying cancer immunology when she applied for the job at the Broad. "As a scientist, as an insider, I just really felt very strongly…that doing traditional academic medicine was not going to be impactful," says Painter.
One thing researchers decided along with patients was to set a low barrier for entry. People who sign up online get a link to a participant consent form and then provide the names of the places where they've been treated and of the doctors who have treated them. Staff at the Broad (rhymes with "road") Institute then call to get all the records, as well as already-biopsied tumor samples it can do advanced genetic analysis on. "What's sad is that somehow it's easier for the doctor or another hospital to get someone's records than it is [for patients] to get their own records," says Wagle.
Participants also provide a bit of saliva in a kit that the Broad Institute sends them. One of the most valuable things patients provide—one that these studies are especially good at collecting—is continual feedback. Researchers can ask patients about other medical conditions they have and request additional records. "We can create this really detailed genomic map of their tumor, connected to all of their clinical information," says Wagle, "and then, if we want, connected to additional questions we can ask the patients."
All this data will feed both into studies at the institute as well as an open database of anonymized records that any cancer researchers can access. By the end of 2016 the goal is for the Broad to have its own data portal and also contribute records to a new, soon-to-launched U.S. government database called the "National Cancer Institute Genomic Data Commons." The institute will add new data every six months. "If patients are willing to share their samples, share their stories, and share their data, and they are willing to selflessly give them up, we shouldn't hoard them," says Wagle.
Once the word gets to patients, they have been very willing to join in, say the researchers. "We felt that the community of patients with metastatic breast cancer were crying out for more research and would rally around this kind of idea," says Wagle. That made this condition a good one to start with, he says, but the Broad Institute wants to expand to several other cancer types, beyond the upcoming angiosarcoma project.
The Broad Institute's approach caught the eye of the White House, which listed it as an example of innovation during its Precision Medicine Initiative summit in February. PMI is an overarching concept that medical treatments should be targeted to and customized for individual patients—for example, by sequencing their unique genetic makeup. It overlaps with the White House's Cancer Moonshot, led by Vice President Joe Biden, and focuses on tailored treatments that go beyond using general approaches like high doses of popular chemotherapy drugs. Both White House projects also emphasize bringing in as wide a coalition as possible, including government, industry, and patients themselves.
The Obama administration has made a big push to bring outside tech experts into government—especially after the disastrous debut of the original Healthcare.gov site. This includes bringing in a lot of young people—those millennials for whom things like social media are second nature. But you don't have to be young to network online, say Wagle, an enthusiastic Twitter user who is about to turn 38, and Painter, a Facebook aficionado in her early 40s. "We're non-millennials who like social media," says Wagle. "Just don't ask us to start our Snapchat channel, because we don't know how to do that."