For research to more effectively serve patients, clinicians and others who make health care decisions, we need a new model that brings healthcare systems, clinicians, and patients themselves fully into the process of using data to improve health and healthcare outcomes.
Patient-Centered Outcomes Research Institute advances comparative effectiveness research
Numerous organizations have contributed to laying the foundation for this effort. These include the Office of the National Coordinator (ONC), Agency for Healthcare Research and Quality, National Institutes of Health, Food and Drug Administration (FDA), and U.S. Department of Veterans Affairs (VA). But the task is difficult.
Now, we at the Patient-Centered Outcomes Research Institute are building on those efforts to launch a major next step – investing $68 million in initial funding to develop a National Patient-Centered Clinical Research Network . We see this initiative as providing a much-needed national data infrastructure that will advance patient-centered comparative effectiveness research.
We announced our plans on April 23 at the National Press Club in Washington, D.C., with a roundtable featuring representatives from leading healthcare stakeholder groups. The panelists—from the Association of American Medical Colleges, America’s Health Insurance Plans, National Patient Advocate Foundation, Pharmaceutical Research and Manufacturers of America, FDA and ONC—discussed the unique value our initiative can provide.
Patient-centered comparative effectiveness research comes with challenges
They also described the challenges we face, including:
The Patient-Centered Outcomes Research Institute ’s challenge is to take the data from existing, real-world clinical settings, and to actively involve patients, clinicians, and health care systems in building a national research resource for conducting meaningful comparative effectiveness research that can inform and improve future care.
As Farzad Mostashari, MD, ScM, the National Coordinator for Health Information Technology, noted, “Right now, we are spending trillions on health care, and 99.999 percent of it doesn’t contribute anything to knowledge.”
The National Patient-Centered Clinical Research Network will encompass a wide group of stakeholders
From the outset, the network we propose will include:
This will make it especially well suited to capitalize on the universe of healthcare information that can be collected, analyzed, and transformed into meaningful discoveries.
New funding announced for research networks
We launched our effort by releasing two new Funding Announcements . The funding will go toward creating a series of patient and health systems networks that will eventually link together to become the national network we envision. Required letters of intent are due June 19.
Once formed, we expect the PPRNs and CDRNs will increasingly work together to establish, test, and refine models for data-driven patient-centered research projects.
Creating a national network presents challenges
We know there are many hurdles to overcome:
Patient-Centered Outcomes Research Institute is one of the few research organizations with the resources and capacity to facilitate the creation of a national data infrastructure. We take this responsibility seriously; indeed, improving our nation’s capacity to conduct comparative effectiveness research is one of the reasons we were established.
We want to hear from you
We look forward to watching this initiative grow and evolve with the input, support, and involvement of our entire stakeholder community.
We invite your comments on our vision: watch an archived webcast of the April 23 discussion and tell us what you think. Also, consider applying for the funding we’re dedicating to creating an enduring, sustainable national research network that will serve the interests of patients for decades to come.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org/ .