Over the past 40 years, cancer research has seen revolutionary discoveries — about genes, targeted drugs, and immune therapies — that have already had dramatic effects for some patients.
But to speed progress toward better therapies, we need another kind of revolution: We need to enable cancer patients to become active partners in research.
Why? Because patients’ medical records, tumor samples, and personal experiences hold myriad clues — about which cancers will respond or become resistant to which therapies — that often can’t be found in research labs or clinical trials. Only patients have the right to share their information — to turn the health care system into a learning system where knowledge about any patient’s surprising remission or devastating recurrence can rapidly benefit every other patient.
Some researchers have already begun to recognize the need to turn scientific silos into interconnected networks. For example, a group of leading academic medical centers, spurred by the American Association for Cancer Research, has begun sharing de-identified medical records and genomic data about their patients, depositing the information in public databases.
But to truly transform medicine, patients need to be at the center of this revolution.
Most cancer patients tell us they want to share their information, but there’s been no obvious way for them to volunteer. The vast majority of patients are treated outside of large cancer centers, in community hospitals across the country. Because these centers are generally not connected to research institutions, the experiences of these patients never helps anyone else.
To change this situation, we recently created a new nonprofit, called Count Me In, that aims to let cancer patients anywhere in the United States and Canada be partners in cancer research. The initiative is shepherded by four organizations — Emerson Collective, Broad Institute of MIT and Harvard, Biden Cancer Initiative, and Dana-Farber Cancer Institute.
A few years ago, we launched a project focused on metastatic breast cancer, which kills 40,000 people in the United States each year. Working directly with patients, the team got input on everything from website design to how to make consent forms easier to understand. Patients can join online from their homes, using a secure software platform. They share their medical records, send back a simple “spit kit,” and give permission to use a portion of a tumor sample, stored at their hospital and no longer needed for patient care. Once genetic information is obtained from the saliva and tumor samples and identifying information is removed from the records, the information is shared with the broader medical community.
The Metastatic Breast Cancer Project spread rapidly throughout an emerging social movement, driven by Twitter and Facebook. Along the way, we’ve been touched to see many Count Me In selfies: pictures of patients posing with their spit kits, encouraging others to join them.
In the three years since it began, more than 4,800 patients — across all 50 states and Canada, and receiving care at more than 1,000 institutions — have registered. It’s now the largest cohort of metastatic breast cancer patients in the world aimed at finding molecular explanations for treatment response — far larger than could be assembled at any single medical center.
Projects are now underway on metastatic prostate cancer, gastroesophageal cancer, and angiosarcoma. Angiosarcoma is a particularly interesting case. It’s exceedingly rare, with just 300 diagnoses in the United States per year; already 338 people have signed up.
Although still very new, the projects are beginning to drive scientific discoveries. For example, DNA analysis found some angiosarcoma patients had distinctive patterns suggesting their tumors might respond to immunotherapy, while medical records revealed that a couple of these patients had actually received such therapy and shown dramatic responses. Researchers are now moving rapidly to test this possible association in a clinical trial. Patients sharing their data and experiences quickened the pace of research.
Over the next few years, Count Me In is aiming to launch projects in every major cancer type, as well as many rare cancers. Count Me In will need lots of partners along the way — patients, advocates, caregivers, clinicians, researchers, and philanthropists.
Patient-partnered research projects need to commit to key principles. Patients must have an active voice in decisions. Patient data should never be sold. Researchers anywhere should have rapid access to the de-identified clinical and genomic data, to ensure that anyone can make discoveries.
Patients are realistic: they know that, in many cases, cures are not just around the corner. But they also know they hold the clues that will lead, someday, to the next generation of treatments. We can’t let such information go to waste.
As one patient wrote to us, “I want to live and watch my children grow up. But if I can’t, I want to leave a legacy, and a cure.”
Reed Jobs directs the health team at Emerson Collective, a California-based social change organization. Eric S. Lander, who was a principal leader of the international Human Genome Project, is president and founding director of the Broad Institute of MIT and Harvard. To learn more about Count Me In, visit JoinCountMeIn.org.