A Funder's Latest Big Push To Harness Patient Data for Breakthroughs

Want to score big breakthroughs toward curing some dread disease? Just get a bunch of patient data. Like, data for five million patients. Open it up. Compare and contrast. Run statistical analyses. Look for trends. And let the breakthroughs begin. 

At least, that’s how a lot of big medical foundations seem to be thinking. Recently, we’ve seen RWJF express interest in harnessing the power of personal health data (think: FitBit) and using it to drive public health policy. We’ve seen Duke University land $9.75 million to establish its Information Initiative at Duke (iiD), a data science monolith looking at everything from public health policy to baseball scores. And just last month, the Simons Foundation inaugurated the $4.6 million Kaiser Permanente Autism Family Research Bank, a project to gather genetic material from 5,000 families who have children with autism. The project will give researchers access to detailed genetic, medical and environmental information from ‘trios’—consisting of an individual with autism under 26 years old, plus both of his or her biological parents.

The Helmsley Charitable Trust is also deep into the data collection push with big support for a huge high-tech bank of tissue samples from patients with type 1 diabetes. Now, Helmsley is going even deeper into the data collection pool, giving $17.5 million to the Crohn’s & Colitis Foundation of America to establish an integrated knowledge platform designed to centralize and coordinate patient information—with linked biosamples—across multiple research efforts. It’s called IBD Plexus, and it’s designed to edge closer to precision medicine by using genetic data to craft treatment plans for digestive diseases.  

James Lewis, MD, MSCE, Professor of Medicine and Clinical Epidemiology at the University of Pennsylvania, worked for two years to design IBD Plexus based on a “research exchange” model. “We have seen breakthrough discoveries in IBD, but progress toward identifying effective, personalized treatments and potential cures has been slow,” he explained. “There is a strong and growing demand from both the medical and patient communities for new therapies that will keep IBD in remission, better tools to help select the right therapy for the right patient, and practical ways to reduce variability in the quality of care for individual patients.”

“This project embodies the Helmsley Charitable Trust’s commitment to establishing close and productive partnerships with the organizations that offer the greatest potential to impact the areas that we support,” said Helmsley Trustee Sandor Frankel. “We are thrilled at the prospects of what this important new research platform can achieve in advancing therapies, care and the path to a cure for those with IBD.”