Patient Voices Network Blog

Patient Advisory Network Goes to Washington: 2nd Annual PCORI Annual Meeting Recap

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The 2nd Annual PCORI Annual Meeting was held in National Harbor, MD, on November 16-19, 2016. This year, I attended as the sole representative of the CERTAIN Patient Advisory Network and focused my energies at the meeting on learning about and connecting with other PCORI-funded project teams.




This year’s meeting was even better than last year’s, with over 1,200 patients, researchers, care partners, community advocates, clinicians, policymakers, and others in attendance. This year’s conference theme was “Changing the Conversation about Health Research” and focused on how PCORI has changed research to be more patient-centered and stakeholder-driven, and how this shift in focus has produced better research. 

On November 16, I attended a pre-conference session for PCORI Ambassadors (have you joined the Ambassador Program yet? What are you waiting for?!) that was chock full of great sessions on how ambassadors are currently participating in research, tips and tricks for getting involved in research from a non-researcher perspective, and advice on taking your research advocacy online through social media. The culmination of the day was a wonderful talk by former member of Congress and primary sponsor of the Americans with Disabilities Act when it was introduced into law, Tony Coehlo. Congressman Coehlo made an inspiring and invigorating case for patients being actively involved in research as well as their own healthcare and for PCORI’s value to the United States healthcare system. What a great way to kick off the conference!

The inspiration continued from there. Throughout the two days of the conference, I met so many people who were working hard to involve patients and other stakeholders into their work, or, like us at the CERTAIN Patient Advisory Network, working to create and build community around patient-researcher partnerships in their area.

This year, PCORI made a concerted effort to include options for virtual participation in many of the conference sessions, including the first ever Facebook Live session that allowed for real-time interaction between speakers and virtual participants. The webcast and Facebook Live sessions, as well as the full conference agenda, are available for viewing on the PCORI website, and I encourage you to listen in on some of the great panel discussions that took place throughout the conference!

I left the PCORI Annual Meeting recharged for another great year at the CERTAIN Patient Advisory Network and full of ideas of what we can tackle in 2017. In particular, as Danielle mentioned in her New Year letter, I look forward to incorporating resources, tips, and ideas I heard from others into the building, dissemination, and evaluation of our INSPIRE portal of resources, to be released in February!

1 comment so far:

Sarah forgot to mention that she provided a short presentation on the INSPIRE project and CERTAIN at our Annual PCORI Ambassador dinner in Maryland also. I am looking forward to working more with you all at CERTAIN and within the Patient Advisory Network too. Thank you!

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