The Power of the PIN
In his final State of the Union address, President Obama tasked Joe Biden with heading up a new national effort to “end cancer as we know it.” I was at the Cancer Moonshot Summit that Vice President Biden convened this summer as he told an assembly of cancer researchers and advocates, “It requires a lot more openness — open data, open collaboration and, above all, open minds.” That’s when it hit me. He’s saying exactly what we have been preaching for nearly eight years!
Our journey began when I first met Pat Furlong at a meeting dinner in Paris. Pat, who runs Parent Project Muscular Dystrophy, convinced me that collecting patient perspectives could speed research. She lost two of her boys to Muscular Dystrophy and was determined to help others. She’s a walking Muscular Dystrophy encyclopedia. She has a nursing background. But when she approached advocacy groups and researchers to offer her insights, her passionate voice was dismissed as belonging to a ‘hysterical mother’. They obviously didn’t know Pat.
Pat set out to collect patient insights in a way that researchers would take seriously. She connected us with David Ledbetter and Andy Faucett of Emory Human Genetics who wanted to collect genetic information from the Duchenne community for research. We were Silicon Valley guys that knew how to use the Internet to collect data from worldwide patient populations. Together we built DuchenneConnect. It was the first program to collect disease data directly from a patient community and combine it with patient-provided genetic testing results.
That initial idea of bringing advocacy, academia, government and industry together into a patient insights and genetic data repository has grown into our Patient Insights Network (PIN). We build and host PINs for advocacy groups at no charge as long as they openly share de-identified data because it’s the right thing to do for patients. We share our data with government and academic researchers too, because patients ask us to.
Over the past decade, through our Patient Insights Network, we’ve collected patient and clinician reported data on more than 400 diseases. We’ve combined it with genetics and shared it with researchers. We run the National Down Syndrome Registry and National Pregnancy Study for the National Institutes of Health, too.
Listening to Joe Biden today at the readout from the summer meeting, I realized we are in the midst of our own Cancer Moonshot. PatientCrossroads will soon be collecting cancer data from 21 countries across Latin America in partnership with 125 advocacy organizations and sharing the data openly with researchers. As testing becomes more accessible and affordable, we are able to collect richer genetic data. Plus we are integrating data from electronic medical records with patient consent.
All of this because one ‘hysterical mother’ refused to be silenced. That is the power of the PIN. We have what it takes to collect and curate patient data to drive the development of better treatments, faster. PatientCrossroads has come a long way, and we still have big plans.