by Janice Tufte, PCORI Ambassador and member of the CERTAIN Patient Advisory Network Steering Committee
The 3rd Annual PCORI Annual Meeting was held in Crystal City, Virginia on October 31 through November 2, 2017. Researchers, clinicians, life science professionals, and patients all came together to hear about results of PCORI-funded research. Freddie White-Johnson, Founder and President of the Fannie Lou Hamer Cancer Foundation, delivered an inspiring, from-the-heart keynote opening address about her moving work with patients who have cancer coming from diverse socioeconomic backgrounds in the Mississippi Delta. The following morning, actor/writer/director Alan Alda, who is also founder of the Alan Alda Center for Communicating Science at Stony Brook University in New York, followed with a humorous yet serious story of how he became more deeply involved in communication science and dissemination of research findings to patients and the general public. Both of these outstanding keynotes can be viewed online at the PCORI Annual Meeting website. PCORI Executive Director Joe Selby’s recap of the Annual Meeting also offers a view of the meeting from PCORI’s perspective, and in particular highlights the remarks of a former member of Congress who initially opposed the creation of PCORI but has become an ardent supporter of the Institute after seeing the impacts of its funded work over the past 7 years.
Breakout and plenary sessions over the course of the meeting focused on topics such as shared decision-making, PCORI’s policy on data sharing, cancer treatment options, healthcare efficiency improvement, outcomes improvement for vulnerable populations, alignment in services for individuals with chronic conditions, patient-centered multiple sclerosis research, the opioid crisis and pain management, dissemination and implementation of research findings, PCORnet, and many more! Many of these sessions were recorded, and I would recommend that you watch any sessions that are of interest to you!
This year’s meeting also included multiple poster sessions, where PCORI-funded project teams had the opportunity to share their work with the PCORI community. CERTAIN Patient Advisory Network Danielle Lavallee was there, sharing about the INSPIRE Research Portal.
The Annual Meeting was preceded by the PCORI Ambassador Pre-Conference session, which hosted an eclectic group of Ambassadors came to learn about PCORI’s goals for the next year, opportunities to get further involved, and to discuss how to further the voice of patient-centeredness in research. Slides from the Ambassadors Pre-Conference session can be viewed here – many of the Ambassadors shared their stories, including me, found on slides 207-212.
PCORI has purposefully developed and nurtured a group of individuals coming from all walks of life, to come together for a common cause, advocating for patient-centeredness in research, and all striving and working towards health research done better, equitable health care delivery, and better health outcomes. I see the PCORI conference as an exceptional opportunity to learn more about patient-centered research, comparative effectiveness research, the latest findings and results, and how and what my Ambassador colleagues are doing. I look forward to attending next year’s meeting! If you are interested in an opportunity to attend the 2018 PCORI Annual Meeting as well, I would encourage you to explore becoming a PCORI Ambassador, as this is a great way to get involved in the PCORI community and to learn about options for attending PCORI events.