Researchers, cancer patients, and philanthropists launch "Count Me In"

New nonprofit will make it possible for cancer patients to engage with researchers and share their information to speed progress against cancer

Researchers, cancer patients, and philanthropists have come together to launch Count Me In, a new nonprofit organization and model of patient-partnered research. Count Me In allows cancer patients anywhere in the United States or Canada to easily share their medical information, personal experience, and tumor samples for genetic analysis, propelling progress against cancer. Patient information is rapidly processed, de-identified and made available to all researchers worldwide.

Count Me In aims to sign up more than 100,000 patients across all major cancer types, as well as rare cancers, over the next several years. Cancer patients and researchers can visit to learn more, join in one of the four current projects, or sign up to be updated when other projects launch.

Patient information holds important clues that might lead to new therapies or knowledge about who will respond to which treatments — but most of this information is never collected, aggregated, or made available for study.

One reason is that the vast majority of cancer patients receive treatment in community hospitals and clinics — not at the large academic medical centers that conduct cancer research. Because of this, only a fraction ever have the opportunity to contribute to research that might unlock critical insights.

Count Me In is organized as a 501(c)(3) nonprofit organization designed to benefit patients and researchers. Count Me In is being stewarded by four leading organizations: Emerson Collective, a California-based social change organization; Broad Institute of MIT and Harvard, a leading nonprofit biomedical research institution; the Biden Cancer Initiative, an independent nonprofit organization that builds on the federal government’s Cancer Moonshot; and the Dana-Farber Cancer Institute, a leading cancer hospital.

Count Me In is supported by philanthropy and does not sell patient information. It is committed to patients having an active voice in decisions, and researchers everywhere having rapid access to new data to ensure that anyone can make discoveries. A significant component of Count Me In projects is direct engagement between patients and researchers. Through online groups and one-on-one communication, each research project maintains a close working relationship with participants.

Count Me In began with discussions between Emerson Collective and Broad Institute in 2013 about new approaches for patient-partnered research, which led to projects launched with Dana-Farber Cancer Institute beginning in 2014 to test ideas and create the necessary infrastructure.

Since then, four projects have been launched and thousands of patients have chosen to donate their medical records, tumor samples and genomic information. More than 5,700 patients receiving care at more than 1,000 medical centers across all 50 US states and Canada have participated in Count Me In projects to date.

The current projects are:

“Answering many important questions about cancer will require engaging and empowering many more patients as partners and offering the opportunity to participate in groundbreaking research to all people living with cancer, whether they live near a research hospital or not,” said Nikhil Wagle, the director of Count Me In, and medical oncologist and cancer researcher at Dana-Farber Cancer Institute and the Broad Institute. “The challenge has been that most stored tumor samples and medical records have not been available for these types of studies, because most cancer patients are cared for in community settings where this type of research is not done. Count Me In aims to help make that possible.”

“By connecting with patients and advocacy groups through social media, we have been able to build true partnerships with women and men who understand that, although these research projects are not likely to personally help them, their experiences and voices matter and may help change the future for other patients in measurable ways,” said Corrie Painter, associate director of Count Me In and cancer researcher at the Broad Institute. “These patient-partners have helped us design our outreach to engage a more diverse set of people, make consent forms easier to understand, and design entire studies from the ground up.”

With this new model of patient-partnered research, Count Me In teams will make information widely available through public databases, such as the cBioPortal for Cancer Genomics and the National Cancer Institute’s Genomic Data Commons. Each research project within Count Me In will collect and de-identify patient data, and combine them with data from genetic analysis of tumor, blood and saliva samples. These data will then be released at regular intervals to provide a continuously growing resource for analysis by researchers.  

Count Me In is on a mission to make every patient’s experience count in our efforts to understand and ultimately overcome cancer,” said Reed Jobs, director of Emerson Collective’s Health team and co-chair of Count Me In. “By harnessing modern communications, patient groups from across the country, and cutting-edge research, we can overcome cancer together.”

“Many patients have told us they want to share this information, but have had no way to do it,” said Eric S. Lander, founding director of Broad Institute of MIT and Harvard and a co-chair of Count Me In. “Patients’ medical records, tumor samples, and personal experiences hold myriad clues -- about which cancers will respond to or become resistant to which therapies -- that often can’t be found in research labs or clinical trials.”

Over the next few years, Count Me In plans to launch additional projects in all major cancer types, as well as many rare cancers, including brain cancers, osteosarcoma, pancreatic cancer, lung cancer, colorectal cancer, urinary cancer, ovarian cancer and others.

“Patients are important--the research is for patients,” said Joel Nowak, a patient-participant in the Metastatic Prostate Cancer Project. “I think patients are able to help researchers develop better questions and, more importantly, find ways to reach out into the community of patients.”

“African Americans and people of color are often the most forgotten about in research, so we’re not counted in,” said Bridgette Hempstead, a patient participant in the Metastatic Breast Cancer Project. “Count Me In is a place you want to be to make sure that when other researchers are looking at how to cure cancer that you're counted in.”

With patient consent, all data created by Count Me In programs are shared with the global biomedical community after being stripped of readily-identifiable information to rapidly accelerate the pace of discovery and expand our understanding of this disease.

“The potential to improve the cancer experience for patients and their families is within reach, and the key to making this happen has to do with standardizing, sharing, and putting the power of data in the patient’s hands,” said Greg Simon, President of the Biden Cancer Initiative. “Count Me In helps us do that, at a scale that was unimaginable and impossible just a few years ago.”

“As the Count Me In projects have already demonstrated, patients are often eager partners in the effort to accelerate cancer research,” said Laurie Glimcher, M.D., President & CEO of Dana-Farber Cancer Institute. “Expanding the reach of this innovative patient engagement model will empower even more patients to participate in research more directly, and help unlock the potential of their data and experience to drive new discoveries.”

“As a patient, I want to contribute more to the research,” said Shoba Rao, a patient participant in the Angiosarcoma Project. “As a participant in Count Me In, you’re contributing to the scientific community and whether it helps you or not, it’s going to help people later on.”

As Count Me In launches new projects in the coming years, the organization also plans to launch a smartphone app in 2019, which will feature a simple sign-up process and will provide additional research project information for participants.