USIDNET Highlighted in ‘Champions for Change’ Ceremony at the White House

It’s not every day that I can help bring primary immunodeficiency diseases to the national stage. On Wednesday, July 8, the White House recognized nine individuals as “Champions of Change” in Precision Medicine, and I was honored to be one of them and represent the Immune Deficiency Foundation (IDF).

Precision medicine seeks to change how medicine is practiced, taking into account individual differences, empowering patients and placing them at the center of care. Through “Champions of Change,” the White House selects patients, researchers, innovators, and advocates who are advancing our understanding of health and disease by harnessing data to account for these individual differences, such as those in people’s genes, environments, and lifestyles, to improve patients’ health. My selection was based on IDF’s innovative programs: IDF ePHR, the electronic personal health record designed for the primary immunodeficiency community, and PI CONNECT, the IDF Patient-Powered Research Network that brings together patient data from IDF ePHR with clinical data in the United States Immunodeficiency Network (USIDNET) patient-consented registry.

When we gathered before the Champions ceremony, I realized that I was surrounded by remarkable thought leaders and pioneers in precision medicine, and it became incredibly clear how IDF’s work on behalf of the primary immunodeficiency community is part of a much larger, national effort to make patients participants in research. As Francis S. Collins, MD, PhD, Director of the National Institutes of Health, said in his remarks, “We don’t think of them as patients. We think of them as partners, as participants.”

PI CONNECT empowers patients to participate and help transform research by sharing their data and their individual experiences. This is truly part of a national movement that will help researchers find answers, ultimately individualizing treatment and providing better outcomes for patients. But we need more people to take part. At the event, Brian Deese, Senior Advisor to President Obama, explained, “We’re going to need people to participate. We’re going to need people to donate their data for science … we are going to need people to be active participants with us in shaping this process.”