1. Patient Engagement in Research July 2013 1

2. PCORI Patient Engagement: Our Vision A large, diverse PCORI community established with broad reach into patient, caregiver and advocacy organization communities A large, diverse, well informed PCORI patient/caregiver community actively engaged in all aspects of the research process Have successfully created trust, legitimacy and uptake of PCORI research findings 2 3. Research Done Differently Patient engagement as a path to rigorous research Tell us what PCORI should study Help determine what we fund Tell us how we are doing Help us share research findings Engagement Partner in the conduct of research 4. Tell us what PCORI Should Study I want to know which blood glucose testing approach is best for me to manage my diabetes. Which support group intervention is best for Latina breast cancer survivors and their caregivers? What systems based approach would help prevent injury from falls in the elderly? I want to know which asthma management tool will help my childs asthma Submit your questions: online: www.pcori.org/questions Workshops Roundtables Engagement Awards Ambassador program 5. Help determine what we fund Advisory Panels & Working Groups PCORI Reviewers 5 6. Participate as a Patient Partner in PCORI funded research Help determine what needs to be researched Help write proposal Participate as Co-PI Define outcomes important to patients Monitor the study conduct and progress Help recruit participants Disseminate research results Co-author manuscript 6 7. Facilitating patient partnership in research Ambassadors Engagement Awards 7 8. 8 National Patient-Centered Clinical Research Network: Our Vision Steering Committee Scientific Advisory Board Special Expert Group Coordinating Center Staff