Patient Centered Outcomes Research Institute

Hello everyone,

What a great meeting this month! So many PFAnetwork members participated, and we had a great discussion about Patient Centered Outcomes Research Institute, who recently awarded a team of PFAnetwork members with a PCORI Engagement Award. Congratulations to Janice Tufte, Bill Adams, and Ting Pun!

If you aren't familiar with PCORI, I would encourage you to take a look at their website to learn about all the ways the organization creates space for patients and families in research. You might be thinking, "What could I possibly contribute to research???” and the answer is, as with all of our patient partnership activities: your lived experience. PCORI believes that when research teams get direct input from a diverse group of patients living with the condition being studied, the research is far more likely to improve the lives of all people living with that condition. With PCORI, there are many opportunities for patient family partners to be not only study partners, but also to lead and co-lead research teams!

If you have an idea, or questions about how to become more involved in PCORI research, please consider connecting with peers in our community, like the award-winning team above, who have a lot of experience with PCORI for mentorship and support. This is what our community is all about!

Be well,

Libby Hoy

PFCCpartners, Founder + CEO