By Donna Cryer
As patients, we know better than anyone that information is power when it comes to deciding which treatment or care choice is best for us. Whether we face a life-threatening illness or a chronic condition, a common or rare disease, we want to know not what might be effective for the “average” patient but what will be right for us given our particular circumstances.
This issue is especially relevant today. Our healthcare system is evolving to be more patient-centered, efficient, and better able to deliver maximum value to all. That makes the bond between patients and those who care for them more vital than ever, as patients take on greater responsibility to decide with their clinicians which healthcare options are best for them and their families. But they can do that well only if they have reliable, useful information that answers the questions that matter most to them.
That’s why I’ve been so pleased to work over the years with the Patient-Centered Outcomes Research Institute. PCORI was established in 2010 and authorized by Congress to fund studies designed to address this issue by funding studies comparing which care approaches work best, for whom, under which circumstances. PCORI involves patients like me and other healthcare stakeholders throughout the research process, from helping to pick the questions to be studied through conducting the studies and being part of the process of disseminating the results. This helps to ensure that we ask the right questions and that the findings will be useful, relevant and more likely to be taken up in practice.
That experience makes me especially excited to be part of a new venture created to assure the long-term future of PCORnet, the National Patient-Centered Clinical Research Network – one of PCORI’s boldest initiatives.
PCORI funded the development of PCORnet as a tool to advance its mission to produce and promote high-quality research guided by patients and the broader healthcare community. PCORI’s Board of Governors saw early on that if we were to truly change the way health research is done, our nation needed the infrastructure to conduct such patient-centered studies faster, more efficiently and less expensively than in the past. That’s what PCORnet is designed to do by harnessing health data captured through electronic health records, insurance claims data, patient-reported outcomes, and other sources, and embedding research in routine clinical care.
But PCORI’s Board knew that to truly be transformative, PCORnet had to be a national resource for evidence generation, open to any institution or organization interested in funding studies that used its infrastructure capacity under the unique governance structure and standards that ensures patients are involved in every step of the way. So a group of the PCORI awardees who have built PCORnet developed a plan to do that, overseen by the new People-Centered Research Foundation (PCRF), a private, independent non-profit organization committed to accelerating people-driven research that is faster, more user friendly for patients and providers, and less costly than has been possible to date. I’m proud to be a member of PCRF’s founding Board of Directors, representing the patient perspective along with a group of world-class colleagues, chaired by former FDA Commissioner Robert Califf, MD. You can see the full list of Board members and read more about the PCRF here.
PCRF doesn’t replace PCORI, which continues to fund comparative clinical effectiveness research as it has since it was established, guided by patients and others from across the healthcare community and dedicated to providing them with the useful information they need to make better-informed healthcare decisions. And PCORnet’s participating networks continue to use their PCORI funding to build out and demonstrate their research readiness. But all of this work now has a powerful new partner in PCRF, which is putting together the organizational structure to help PCORnet become a sustainable national resource as PCORI intended. Over the next two years, PCORnet will continue to grow, leveraging the resources PCORI invested in this critical patient-centered research platform.
Establishing PCRF is a natural next step in PCORnet’s evolution. I invite you to join me in celebrating this milestone, recognizing PCORI’s achievements in funding research that can empower patients to make informed health decisions centered on their needs, and creating PCORnet as a platform for advancing that bold vision.