‘Power to the People’ Gets Real in Research

In a recent blog at the NY Times, Steve Lohr observes that “Traditionally, patient information has been tapped for research in large pooled databases” but that is changing due to “Institutional practice, individual attitudes and new technology…” leading to new opportunities in research. He quotes Dr. Stephen Friend of Sage Bionetworks: “The patient, doctor and researcher – each is a different kind of expert.” Mr. Lohr and Dr. Friend are right on target. We are seeing exactly these trends play out in real-time in www.iConquerMS.org – an initiative funded by the Patient-Centered Outcomes Research Institute  – designed not...