In November 2011, a National Academy of Sciences committee issued a report calling for the creation of a "Google Maps"-like data network intended to revolutionize medical discovery, diagnosis and treatment. Today, the co-chair of that committee, UCSF Chancellor Susan Desmond-Hellmann, MD, MPH, is issuing a call-to-arms to patient advocates to help make that idea a reality.
In her editorial, reported in the April 11 issue of "Science Translational Medicine," Desmond-Hellmann calls on patient advocates to work with policy makers in the U.S. Congress and elsewhere to develop regulations that would more efficiently link patient information between research and clinical care settings, while continuing to protect patient privacy. The information is a key component of the proposed data network and could accelerate medical advances, she and her Academy co-authors say.
The so-called "Knowledge Network" would integrate emerging research on the molecular makeup of disease with clinical data from patients, to drive the development of a more accurate classification, or taxonomy, of disease beyond classification by organs and symptoms. The goal would be more diagnostics and treatments tailored to the individual patient which the committee called "precision medicine," meaning both "accurate" and "precise."
The opportunity to create an entirely new way to classifyand therefore understand and treathuman disease "could bring us to the tipping point at which the remarkable scientific advances in biomedicine and engineering translate to concrete therapeutic benefits for humankind," Desmond-Hellmann wrote in her editorial.
Noting the role that patient advocates undertook around the HIV/AIDS epidemic of the 1980s, she said, the vision of the Academy report "is worthy of that kind of passion and leadership."
The Knowledge network would be centered on a dynamic, interactive data repository, or "Information Commons," that, like G
|Contact: Jennifer O'Brien|
University of California - San Francisco