Dana-Farber Cancer Institute

Count Me In: A Patient Movement to Transform Cancer Medicine


Count Me In enables patients to change the research paradigm, empowering them to transform cancer care by sharing their samples, their data, and their voices.

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To learn more about – or provide significant funding to – this project, please contact Lever for Change.

Project Summary

Patients uniquely hold the keys to understanding and curing cancer. Their data—their medical records, biospecimens, and experiences—contain myriad clues that will lead to the development of new therapies and treatment strategies. Linking and aggregating this vast data will enable researchers to find patterns that lead to the next wave of discoveries and treatment advances. However, due to logistical, systemic and financial barriers, this data has not been accessed or collected broadly—certainly not from diverse patient populations or remote corners of the country. Simply, most patients have never been asked if they want to contribute their tissue samples and medical information to change the course of these diseases. Count Me In will provide an unprecedented opportunity for cancer patients anywhere to share their information with researchers everywhere—driving a movement that enables patients to be partners in research and take an active role in transforming cancer care.

Problem Statement

Over the past 40 years, cancer research has produced revolutionary discoveries—about genes, targeted drugs, and immune therapies—that have had dramatic effects for some patients. However, these discoveries were based on a relatively small number of patients being treated in a limited number of academic centers. The next wave of advances against cancer will require aggregating and linking vast amounts of genomic, molecular, clinical, patient-reported, and experimental data, from a diverse set of patients. This will enable researchers to find patterns that will lead to discoveries and treatment strategies for all patients. However, to date, most of this data has not been collected and accessed. Initial efforts to partner directly with patients have been limited for several reasons, including:•~85% of adult cancer patients in the U.S. are treated in community settings rather than at academic cancer centers where research is conducted. •Even for patients on clinical trials, tumor tissue is not typically collected and analyzed. •Even for collected samples, the cost of genome sequencing has historically been prohibitively high to do systematic analysis. •Direct outreach to patients on a national or international scale has historically been considered impractical. Patients have the power to advance cancer research in a way that no one else does. Their tumor samples, medical records and personal experiences hold clues—about which cancers will respond or become resistant to which therapies—that often can’t be found in research labs or clinical trials. Yet most patients have not had the opportunity to participate in research.

Solution Overview

The idea behind Count Me In is simple: let cancer patients anywhere share their information with researchers everywhere in order to help reveal patterns in the clinical, genomic, molecular, and patient-reported data. Thanks to social media, the internet, advocacy groups, and empowered patients, Count Me In enables patients to become partners in the search for cures regardless of who they are or where they receive care. Count Me In aims to transform cancer medicine by engaging hundreds of thousands of patients living with all major cancer types, as well as rare and pediatric cancers. We hope to bring about a cultural shift that empowers patients, researchers, and clinicians to work in partnership to accelerate medical progress. We envision that every cancer patient will be able to partner with researchers to drive medical progress by: —Sharing their medical records with a centralized platform and consenting to their medical data being used in a variety of ways, including being able to easily instruct health systems and companies to share their data —Sharing patient-reported data related to their disease —Sharing their samples for analysis —Having access to information derived from their shared data —Receiving new information generated by projects with clinical interpretation In the next five years, our goal is to launch 20 projects, enrolling at least 100,000 patients and generating and sharing a dataset of clinically annotated tumor and germline genomic data. Ultimately, we hope to advance a future in which patients are informed about optimal clinical care based on their data.

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Project Funders

  • Minderoo Foundation 2019 - 2024
  • Emerson Collective

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