11:20 - 11:40 amSunday, September 18
LK 101
Genomics research meets patients in the era of social media
LK 101
Genomics research meets patients in the era of social media
Broad Institute
As a biomedical scientist preparing to defend my PhD in biochemistry, the last place that I thought to look for information after being diagnosed with an exceedingly rare and aggressive cancer was social... Read more

Description

As a biomedical scientist preparing to defend my PhD in biochemistry, the last place that I thought to look for information after being diagnosed with an exceedingly rare and aggressive cancer was social media. But after being told that there was no data to guide my clinical decisions and no scientific knowledge about my disease, I turned to any resource that I could find on the internet. I typed the words angiosarcoma cancer into my browser, and the series of events that followed reset the entire trajectory of my career and life’s mission to accelerate the pace of discovery in cancer research. All of which was set in motion when I stumbled upon 8 people in an online support group. Beyond the statistics which suggested that I wouldn’t live for one year were a handful of people determined to live.

Those first 8 people quickly turned into 2000, and the knowledge that we brought to our support group far outpaced the data being published in the literature. We funded research, we shared our genomic panel results and generated a conduit for people to be seen by doctors who we taught to become experts in angiosarcoma. It became clear that if I was going to make a deep impact for my very rare cancer it wasn’t going to be behind the bench. So when the time came to choose between a traditional academic tenure track position or a path less defined in the world of advocacy, I chose the latter, and joined the Broad Institute of MIT and Harvard in order to tap into the potential of social media for a direct-to-patients nationwide genomics project.

They believed that engaging patients in research would greatly accelerate the pace of discoveries. Working iteratively from conception through implementation with patients and advocates we built the Metastatic Breast Cancer Project, a nationwide genomics studies that empowers patients to contribute their tumor samples and clinical information to research. In the 3 months since launch, we have enrolled 1200 patients who have provided responses that have generated new research questions that were unanticipated. For example, we have rapidly identified large numbers of patients with rare phenotypes, which has been historically challenging using traditional research methods. We will generate a clinically annotated genomic data set and share it widely in order to contribute to our collective understanding of this disease.

As a result of our early successes, we are now building the Angiosarcoma project (ASproject). Using social media, we will engage a living cohort of patients that will far exceed those seen at any one institution in order to generate the genomic landscape of a disease that would be intractable to study through traditional methods. Ultimately, we seek to establish a broad patient-researcher partnership to accelerate genomic discoveries across multiple cancers that may serve as a means to build a new clinical and translational research infrastructure for patients with cancer.

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