Participant morale was high at the Patient-Centered Outcomes Research Institute (PCORI) Annual Meeting, which took place November 17-19, 2016 at the Gaylord National Resort and Convention Center in National Harbor, Maryland. Over the course of three informative days, over 300 patients and patient advocates, 200 clinicians, 400 researchers and other key stakeholders from over 100 health systems gleaned valuable insights into PCORI’s dedication to furthering patient-centered research. Notable sessions on PCORI’s revolutionary and innovative initiative, the National Patient-Centered Clinical Research Network (PCORnet), included presentations by researchers and an update on progress-to-date.
Day one kicked off with an opening address by PCORI’s Executive Director, Joe Selby, before shifting gears into a moving address by Stephanie Buxhoeveden of PCORnet’s Multiple Sclerosis (MS) Patient Powered Research Network (PPRN), who detailed her unique experience as both a provider and a patient with MS. Stephanie stressed the importance of bridging the gap between patients, researchers and caregivers to accelerate real world outcomes.
“Having sat on both sides of the table as practitioner and patient, I can tell you with confidence that patients and caregivers have just as much valuable disease expertise, if not more, than doctors,” said Stephanie. “Via PCORnet’s MS PPRN, I am taking an active role in research and putting power in the hands of the people who should have had it all along—those who are living with the condition.”
You can read more about Stephanie’s experience in this blog, which she posted in anticipation of the conference.
PCORnet also took center stage on day two of the Annual Meeting during an afternoon session that spotlighted its progress and functionality. Participants heard from PCORnet’s Engagement, Data, and Research Committees about advancements in data infrastructure (including the most recent iteration of the Common Data Model), the research resources currently available to start conducting high-impact research, and models of engagement for participants and clinicians. Enthusiasm was high from the panelists as they celebrated PCORnet’s progress to date and urged continued and frequent early engagement from all stakeholders in the clinical research process. See the slides from these presentations here.
Many were excited that PCORnet is now open for business with a robust data model and encouraged everyone in the room to participate and help inform better ways to use data.
Day three included an all-day session on “PCORnet in Action: The Journey Toward People-Driven Research Transformation.”
Joe Selby kicked off the day: “PCORnet is the most ambitious visualization of a long-held dream that we can tap the power of computerized clinical data and our capacity to involve stakeholders in the research process to drive better outcomes,” he said. “What was once a visionary ‘holy grail’ has now become a core component of a national evidence generation infrastructure that is embedding itself in delivery systems and communities of patients.”
The first half of the day highlighted PCORnet research underway, including study updates on INVESTED, ADAPTABLE, the PCORnet Bariatric Study, Healthy Mind, Healthy You, and Identifying and Predicting Patients with Preventable High Utilization.
The second part of the day included a poster session that included 16 PCORnet study posters. Search and see all posters here.
Finally, the day wrapped up with a look at how to access PCORnet resources, including sessions about data characterization, SMART IRB, engagement best practices from demonstration studies and plans for the upcoming PCORnet Commons. You can access all PCORnet slides for day three here.
Many thanks to all who participated in this exciting event on behalf of PCORnet and contributed to its success. If you were unable to attend the PCORI Annual Meeting in person, you can still watch archived webcasts of plenary sessions, and blog posts from meeting presenters, including Stephanie Buxhoeveden and Megan O’Boyle from the Phelan-McDermid Syndrome Foundation here.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit 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 healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.