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'Not Your Father's Clinical Trial Network'

Oftentimes medical practice recommendations are undergirded by expert opinion rather than by multiple randomized control trials and can't quite answer the questions patients and their families have about what treatment is best for them, write Francis Collins, the director of the US National Institutes of Health, Kathy Hudson, the deputy director for science, outreach, and policy at NIH, and their colleagues in a commentary appearing in the Journal of the American Medical Informatics Association.

They argue that the new National Patient-Centered Clinical Research Network, or PCORnet, will help researchers provide high-quality scientific evidence for a number of such clinical questions. As the names suggest, PCORnet and the Patient-Centered Outcomes Research Institute also aim to include patients in the research process.

Such a collaboration "will help researchers develop more accurate and meaningful information for patients, their caregivers, and clinicians — information that will allow our healthcare systems to achieve the best possible clinical outcomes, and the outcomes that matter most to patients," Collins, Hudson, and their colleagues say.

So far, they note that 11 clinical data research network and 18 patient-powered research networks applications have been recommended for funding, though efforts to finalize the network's governance and address specific challenges — such as informed consent, the use of central institutional review boards, and more — are underway.

"PCORnet holds the promise to transform clinical research — but many challenges lie ahead," they add. "For ultimate success, all those involved in shaping this revolutionary dream must maintain the bold and visionary attitude that enabled its creation. This is not your father's clinical trial network."