2021 PCORI Virtual Annual Meeting Breakout Session

Patients and patient-led organizations are changing the research enterprise and driving patient-centered research. But how do they do it? Which strategies work best? This session will address issues relevant to all stakeholders participating in patient-centered outcomes research and explore resources developed by PCORI’s Patient/Participant-Driven Research Community Learning Network. The network builds capacity and promotes sustainability of patient and community stakeholder-led groups that work to make patient and participant perspectives and priorities a fixture of health research. Panelists will discuss how they improved member diversity and built sustainable organizational partnerships to support participant-driven research, including how they designed and implemented strategies.

Participants (Moderators and Discussants)

Aberdeen Allen Jr
Patient Governor

Elizabeth Cope
Senior Director, Public and Population Health

Claudia Grossmann
Senior Program Officer, Research Infrastructure
Patient-Centered Outcomes Research Institute

Laura Kolaczkowski
Patient Co–Principal Investigator

Sara Loud
Chief Executive Officer (CEO), Accelerated Cure Project, Inc. (ACP)
Program Manager and Co-Chair of Engagement Committee, iConquerMS

Shilpa Venkatachalam
Associate Director, Patient-Centered Research, Global Healthy Living Foundation
Co–Principal Investigator, ArthritisPower Research Registry

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