Leading Medical Informatics Journal Highlights PCORnet

If you’ve been following the work we’ve been doing at PCORI, you probably know that we’re very excited about our effort to develop PCORnet, the National Patient-Centered Clinical Research Network. PCORnet is our collaborative effort to harness the power of health data—including electronic health records and information reported by patients themselves—to conduct research that answers the questions that matter most to patients and those who care for them.

PCORnet will link an array of individual health data networks—some based in clinics, hospitals, and health systems; others organized and managed by patients themselves and their partners. It is not a massive, centralized database of patient records but rather a network of networks that will let researchers draw on real-world clinical settings to study large amounts of de-identified patient data more quickly and cost-effectively than any individual network could. This work will be governed by participating patient and healthcare communities through a steering committee and series of task forces that develop policies for data sharing, security, and protection of patient privacy.

PCORnet is generating a lot of interest in professional communities and the general public. Now, the Journal of the American Medical Informatics Association has published a special collection of papers on the effort, along with an editorial by Francis Collins, MD, PhD, Director of the National Institutes of Health and a member of PCORI’s Board of Governors.

In addition to this editorial, the collection includes an overview of PCORnet's development and profiles of all 11 Clinical Data Research Networks that are part of PCORnet. It also describes PCORnet's 18 Patient-Powered Research Networks, groups of patients and caregivers interested in participating in patient-centered comparative effectiveness research.

We at PCORI are pleased to have supported free access to these articles on the JAMIA website. We hope you’ll take a look and let us know what you think about PCORnet, either by leaving a comment below or by sending your thoughts to us at info@pcori.org.

Greene is a Senior Program Officer in PCORI’s CER Methods and Infrastructure program