Everyone Counts: How Opening Cancer Research to Patients Leads to Better Outcomes


By involving cancer patients in research-collecting efforts, Count Me In can speed the discovery and development of new treatments.

African American women under the age of 45 develop metastatic breast cancer at higher rates than do white women, and have higher mortality rates than any other group. And yet prevention and treatment efforts tend not to focus on them, nor other subsets, like men, some 2,600 of whom are expected to be diagnosed with breast cancer in 2019. A big part of that has to do with the ways these diseases are studied. Because research is typically limited to patients at a few large urban hospitals, huge swaths of the country are not counted in scientific surveys, which leads to incomplete data on patient outcomes and missed opportunities for insights.

Count Me In is a nationwide nonprofit organization that brings patients, doctors, and clinicians together to fill that gap. By inviting patients to share genetic samples and medical record information with leading research organizations, Count Me In is empowering patients—particularly those who are the least visible—to be active participants in the efforts that will lead to breakthrough discoveries and treatment.