On April 5, ASCO’s CancerLinQ® and Count Me In announced a new collaboration that aims to allow cancer researchers to learn from every patient with cancer by actively engaging patients as part of the clinical research enterprise. CancerLinQ—a real world oncology data technology platform developed by ASCO—collects and aggregates de-identified EHR data from oncology practices across the United States to advance cancer care through quality improvement and research. Count Me In, a nonprofit research initiative of the Broad Institute of MIT and Harvard, the Emerson Collective, and Dana-Farber Cancer Institute, provides patients with a mechanism to participate in cancer research by sharing their unique, de-identified medical information and history with cancer researchers and investigators.
CancerLinQ will facilitate patient participation in clinical research by engaging its provider network to recruit and refer patients to the Count Me In program in the doctor’s office, at the point of care. Patients who enroll in Count Me In consent to share information about their cancer experience, copies of their medical records, and samples.
“The reality is that less than 5 percent of patients with cancer participate in clinical research, and as cancer researchers we must do better and give more patients the opportunity to participate in research,” said CancerLinQ LLC Chief Executive Officer Sean Khozin, MD, MPH. “With CancerLinQ’s new collaboration with Count Me In, we’re democratizing patient participation in cancer research by allowing more patients with cancer, including those from marginalized communities who have historically been excluded from research, to contribute to cancer discoveries and propel progress against cancer.”
“Every patient with cancer should have the opportunity to participate in and contribute to cancer research,” said Count Me In President and Director Nikhil Wagle, MD. “Patients have the unique ability to accelerate cancer research in a way that no one else can. Together, Count Me In and CancerLinQ will continue to advance our collective mission to turn our health care system into a learning system, by letting patients with cancer anywhere share their information with researchers everywhere—so that knowledge about every patient’s experience can benefit every other patient.”
CancerLinQ, one of the largest and most-diverse real-world-oncology databases, includes de-identified data from more than 2 million patients with cancer from all 50 states. The CancerLinQ network includes more than 100 cancer centers and community oncology practices.
Since 2015, more than 10,000 patients with cancer have joined Count Me In and shared their unique medical information and history. Anyone with a history of cancer, living in the United States or Canada is eligible to enroll in Count Me In.