Directly engaging and recruiting patients online using social media will allow broader participation in cancer genomics research and hasten clinical advances.
CHICAGO-Directly engaging and recruiting patients online using social media will allow broader participation in cancer genomics research and hasten clinical advances, according to researchers at the 2016 American Society of Clinical Oncology (ASCO) Annual Meeting, held June 3–7 in Chicago (abstract LBA1519).
In October 2015, the Dana-Farber Cancer Institute and the Eli and Edythe L. Broad Institute of MIT and Harvard launched the nationwide Metastatic Breast Cancer Project (MBCproject.org) to do just that.
Because most patients receive treatment in community settings, “only a small fraction of the 150,000 women and men living with metastatic breast cancer receives care at centers that conduct research on tumor samples,” noted project coauthor Nikhil Wagle, MD, medical oncologist at Dana-Farber and an associate member of the Broad Institute.
The Metastatic Breast Cancer Project aims to address that gap, encouraging patients via social media and through advocacy groups to share tissue and saliva samples and clinical information. Researchers hope the project will yield new leads for developing better treatments for a daunting diagnosis.
Visitors to the Metastatic Breast Cancer Project website are invited to “help transform our understanding of metastatic breast cancer.” Patients can click on a “count me in” button at the top of the screen in order to sign up.
Since October, more than 2,000 patients have done so, 95% of whom have provided detailed clinical information. More than 1,100 participants have signed consent forms allowing project researchers to collect their medical records and to perform next-generation sequencing on their tumor and saliva specimens. More than 400 patients have already submitted saliva samples to the project. The resulting database will be “a shared resource for all researchers,” Dr. Wagle said.
Project researchers are initially focusing on young patients, patients initially diagnosed with metastatic disease, ethnic minorities, and “exceptional responder” patients with long or otherwise extraordinary responses to treatment.
Patients are helping to spread the word, leading Dr. Wagle and others to describe the project as “patient-driven research.”
Many participants have shared “selfie” photographs on Facebook and Twitter, showing them with saliva collection kit boxes and encouraging other patients to participate. Patients have expressed hope and enthusiasm for the project in social-media posts. “Amazing how happy that little box makes you feel,” one patient wrote.
Next-generation sequencing of tissue and saliva samples is underway. Project researchers plan to pilot-test blood “biopsies” in the near future, as well, sequencing circulating tumor DNA.