I know many members of the PCORI community look forward to our Annual Meetings as much as we do. Those who attend regularly tell us how valuable the experience is. But I still get pleasantly surprised by the enthusiastic responses we get as soon as we open registration for the next meeting.
That has certainly been the case this year. More than 470 patients, caregivers, researchers, clinicians, insurers, and other stakeholders have signed up in the first three weeks of registration for our fifth Annual Meeting, being held September 18-20 at the Washington Marriott Wardman Park in Washington, DC. If you’re not among them, I hope you’ll take a few minutes to register. The meeting is free to attend.
This year’s theme, chosen by our multistakeholder Annual Meeting Steering Committee, is Making a Difference: Using Patient-Centered Research Results in the Real World. This theme reflects PCORI’s coming full circle on the research process. Previous meetings have progressed from looking at our work in progress (2015), to first peeks at research results (2016), to reporting on our first large volume of research findings (2017), to synthesizing and disseminating our many findings to the public at last year’s meeting. This year’s theme reflects the efforts of PCORI and our awardees at implementing research findings into practice, changing health care practices based on this new evidence, and improving health outcomes and the lives of patients.
Again this year, our Annual Meeting has earned the designation of being a Patients Included event, something we’re especially proud of. In fact, we are working even harder this year to make the meeting meaningful for both patients and researchers as they work together.
I’m very pleased to be able to announce the opening keynoters for our meeting, Drs. Scott Berns and Leslie Gordon. Both are accomplished pediatricians and researchers, and Scott also serves on our Advisory Panel on Rare Disease. But it is their personal story, along with their professional credentials, that is so compelling and moving. They cofounded the Progeria Research Foundation (PRF) after their son, Sam, was diagnosed with that rare condition. Sadly, Sam died in 2014, at age 17, but not before he became an online sensation with his TEDx talk, My Philosophy for a Happy Life and, thanks largely to PRF’s support, the gene that causes progeria was isolated and the first treatment developed.
I’m also looking forward to the plenary sessions our team is organizing for you to enjoy. As in the past, these will spotlight studies and other initiatives designed to make health research more useful and relevant with the guidance of patients and other stakeholders. You can find session and speaker details on the meeting website, but here are the highlights:
- What's Right for Me? Practical Approaches to Personalized Medicine. This session will feature selected studies representative of our efforts to generate evidence that can help patients work with their clinicians to tailor their healthcare choices to best meet their individual needs.
- How Can We Do That? Effectively Putting New Evidence into Practice. The gap between what we know will improve health care and what we do in practice remains far too wide. This session will highlight projects designed to close that gap in real-world settings.
- How Engagement Is Making Research More Useful. PCORI emphasizes engaging patients and other stakeholders in all phases of our work. This session will highlight what we know about the impact of that approach, how we can apply it more broadly, and what we still need to learn.
- What’s Next? The Future of Patient-Centered Outcomes Research. This forward-looking session will discuss how we can build on PCORI’s initial success and identify new opportunities to advance patient-centered outcomes research.
Our 14 breakout sessions, meanwhile, will focus on such topics as how to reduce the burden of chronic conditions on patients and the healthcare system, taking better care of veterans, using decision making to navigate complex care choices, the impact of telehealth, and improving pain management, among others. We also will feature nearly 100 posters from our awardees.