FLICKR, JOHN O'SULLIVANA national research network, aimed at making use of the volumes of clinical data obtained from routine doctors’ visits, is in the works. The Patient-Centered Outcomes Research Institute (PCORI) is teaming up with the National Institutes of Health (NIH), the Agency for Healthcare Research and Quality (AHRQ), and the Food and Drug Administration (FDA) to create networks of clinical data and patients to drive clinical research. Specifically, the plan includes the widespread sharing of clinical data and the involvement of motivated patients in research.
“If each patient were an active and informed participant in clinical research as part of their regular health care, a visit to a doctor’s office would have the potential to transform the health of millions of individuals,” NIH Director Francis Collins and coauthors wrote in a Science Translational Medicine article published today (April 23).
One flaw in the current clinical research system is how patients are recruited, Collins and colleagues argued. Every time a clinical trial is launched, its organizers start from scratch to recruit patients, and many never reach their originally stated enrollment goals. Furthermore, as researchers recognize the heterogeneity between patients of diseases such as breast cancer or diabetes, there is increasing pressure to delineate the patient populations that respond to certain treatments ...
