CancerLinQ/Count Me In Collaboration Will Allow More Patients to Contribute to Research

By: Nikhil Wagle, MD

Clinical trials have historically been the main way of improving our understanding and treatment of cancer, but less than 5 percent of patients participate in clinical trials. Imagine if we empowered every patient to contribute their unique experiences to research and everyone could learn from those experiences. This week, CancerLinQ® and Count Me In announced a new collaboration intended to help more patients be part of cancer research.

My colleagues and I started Count Me In, a non-profit research initiative of the Broad Institute of MIT and Harvard, the Emerson Collective, and Dana-Farber Cancer Institute, several years ago for the same reason that ASCO launched CancerLinQ around the same time: so much data in cancer care is siloed in unconnected servers and EHR platforms, as well as file cabinets and pathology lab shelves. While we have entered the era of big data, we will not realize its full potential until we harness this power to learn from these patient experiences, samples, and medical data. 

With Count Me In, we give patients who may or may not otherwise have the opportunity to participate in research a chance to help drive cancer research by sharing their unique, de-identified medical information, their samples (including saliva, blood, and/or tumor specimens), and their experiences with cancer researchers and investigators. Anyone with a history of cancer living in the United States or Canada is eligible to enroll – so far, more than 10,000 patients have shared their unique medical information and history.

This collaboration will give patients in CancerLinQ’s network of nearly 100 healthcare organizations of all sizes across the United States the opportunity to enroll in Count Me In. The CancerLinQ team will work with these practices to refer patients to the Count Me In program in the doctor’s office, at the point of care. The patients who enroll will provide their consent to share their medical records, tissue samples, pathology reports, and scans with Count Me In.

By participating, patients can help researchers answer questions in areas that clinical trials may not be able to address. For example, patients’ medical records, tumor samples, and personal experiences hold clues—such as which cancers will respond or become resistant to which therapies—that often can’t be found in clinical trials. In addition, this approach is particularly well-suited to study rare cancers, which have significant unmet clinical needs but are challenging to study due to the fact that patients are geographically dispersed and no one center sees enough of these patients to be able to study meaningful numbers.

For example, osteosarcoma is a rare type of bone cancer that generally develops in the cells that form bones. Of the 800 new osteosarcoma cases each year, roughly half are in children and teens. Given the rarity of this disease, clinical trial options are limited. However, a large database of osteosarcoma cases could allow researchers to test hypotheses on issues that could range from outcomes, treatment responses, patient characteristics, and sociodemographic factors. If we have this greater ability to test a hypothesis outside of clinical trials, then we can accelerate the pace of cancer research and our progress in treating the disease.

Ultimately, this collaboration will help democratize patient participation in cancer research by including more patients with cancer from all walks of life. And through this inclusive collaboration, we hope to not just accelerate cancer research but greatly improve its quality and representativeness. We look forward to pooling our efforts with CancerLinQ as we work towards our mission of making every patient’s experience count.

The author is the founding director of Count Me In, assistant professor of medicine at Harvard Medical School, a medical oncologist at Dana-Farber Cancer Institute, and an institute member of the Broad Institute of MIT and Harvard.