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Abstract Details

American Migraine Foundation: Patient Engagement Map
Practice, Policy, and Ethics
P9 - Poster Session 9 (12:00 PM-1:00 PM)
7-004
To describe and measure patient engagement throughout American Migraine Foundation (AMF) work.
AMF’s mission: to mobilize a community for patient support, advocacy, and drive research for patients with migraine and other diseases that cause severe head pain. AMF works with and puts patients first to mobilize the community utilizing patient engagement best practices. This framework is the AMF Patient Engagement Map.
AMF Patient Engagement Map ensures patients are engaged and contribute across all workstreams. Engaging AMF Patient Advocates (PA) and ARMR (American Registry for Migraine Research) participants are primary targets.  Recruited PAs train to serve as peer-to-peer moderators in online support communities, provide feedback on educational initiatives and guide implementation of strategic imperatives by sitting on Advisory/Scientific Advisory Boards.  PAs were engaged during the Patient Leader Summit to guide health literacy and delivery on ARMR patient materials.  ARMR interns conducted ARMR participant interviews at three ARMR sites to evaluate enrollment, education, and user experience.  
Over ~2 years AMF increased PA involvement from 6 to 22 PAs (266.6%), online community engagement from 17,000-22,000 (29.4%), and in moderating and educating in the online community (0% to 90%). Ten ARMR participants were interviewed: 90.0% female, average age 50.1. Key areas for improvement identified: increase education on ARMR purpose, connect participants to AMF resources for support, and ensure ongoing dissemination of registry results to participants. Reported benefits: use of the app for headache diary and ARMR coordinator support.  Based on results an infographic, quarterly newsletter and Citizen Science program was created utilizing AMF PAs to ensure consistent messaging, education, result dissemination and open communication.
The AMF Patient Engagement Map creates opportunities for patient input throughout the lifecycle of each project to increase patient activation, mobilization, and whose involvement can translate to better patient care.
Authors/Disclosures

PRESENTER 		No disclosure on file
No disclosure on file
No disclosure on file
No disclosure on file