October 30 – November 2, 2018, the Foundation attended the Patient-Centered Research Outcomes Institute (PCORI) 2018 Annual Meeting From Evidence to Impact: Putting What Works into Action, the PCORI Patient Engagement Advisory Panel meeting, and the PCORI Advocacy Day in Washington, D.C.
PCORI was created in 2010 to establish priorities and set an agenda for the conduct of comparative clinical effectiveness research (CER). This type of research compares which care approaches work best, for whom, and under which circumstances to generate evidence that patients and caregivers can use to make better-informed healthcare decisions. Central to PCORI’s objective is patient engagement, which refers to the process of researchers engaging patients and other stakeholders throughout the entire research process to produce information that is useful to the intended patient population.
The Institute’s Advisory Panel on Patient Engagement (PEAP), including Marilyn G. Geller, CEO, convened to review early findings on the contributions of patient engagement in comparative effectiveness research. The findings reflected patient engagement positively impacted all aspects of the research projects. The panel discussed next steps in facilitating patient engagement and disseminating the benefits of engagement to stakeholders and researchers.
On October 31, 2018, Foundation Research and Advocacy Manager, Julia McBeth, who joined fellow PCORI Advocates in meetings with the offices of California Senator Dianne Feinstein, Senator Kamala Harris, and Congresswoman Julia Brownley to advocate for the future of patient-centered outcomes research and, specifically, celiac disease research. Patient-centered outcomes research refers to research that is conducted with meaningful patient engagement as collaborators and contributors to ensure studies address topics most important to patients.
As a member of PCORI, the Celiac Disease Foundation was pleased to represent the celiac community through participation in these impactful events advancing patient-centered advocacy and research.
Want to get involved? Make your voice heard in research and policy by becoming a Celiac Disease Foundation Patient Advocate and joining the iCureCeliac® patient registry today.
Celiac Disease Foundation Attends PCORI 2018 Annual Meeting and Advocacy Day