Mission
To facilitate engagement and partnership of patients in all stages of health-related research and care delivery to improve healthcare access and patient outcomes.
Background
Patients are a distinct stakeholder group. Outcomes research is rapidly evolving and major changes are already being implemented. One common feature is the agreed consensus on the importance to obtain the input of patients in all processes in the value assessments of medicines for society.
Manuscript and Reports
- Fayed N, Botto-van Bemden A, Alam S, Manias E, Sharma R. Optimize Health in Chronic Disease Populations by Putting Patient-Important Outcomes First. Value Outcomes Spotlight. 2026;12(3):52-54
- Llewellyn S, Qiao N, Masurkar P, Botto-van Bemden A, Roydhouse J, Perfetto E. Quality of patient engagement activities in health economics and outcomes research: insights from the ISPOR community. Value Outcomes Spotlight. 2024;10(6):41-45.
- Harrington R. L, Hanna M, Oehrlien E.M, et al. Defining Patient Engagement in Research: Results of a Systematic Review and Analysis: Report of the ISPOR Patient-Centered Special Interest Group. [Editor’s Choice] Value in Health 2020;23(6):677-688
- Camp R, Wheeler R, von Gizycki R, and McBurney, R. From the Patients: Defining Patient Engagement in Research. Value & Outcomes 2020;6(4)
- Harrington, R, Hareendran, A, Scott, A, et al. Patient Engagement in Health Outcomes Research: A Snapshot from the ISPOR Community. Value & Outcome Spotlight 2016;2(5):11-14
Presentations
- ISPOR 2026: Collaborating With Patients to Define Digital Endpoints and Biomarkers That Truly Matter
- ISPOR 2026: Making Preferences Count: Patient-Engaged Values Clarification for Individual-Level Decision Making
- ISPOR 2025: Health Preference Research Today: How Patient-Centered Is It and How Can It Be More Patient-Centric?
- ISPOR Europe 2024: Integrating the Patient Voice Into Economic Assessments of Health Technologies
- ISPOR 2024 “Patient-Centered Research” Special Interest Group Joint Open Meeting
Leadership
Chair
Sam Llewellyn, BSc
Director, Patient Centered Research, Vitaccess
Richmond, LON, United Kingdom
Past Chair
Angie Botto-van Bemden
Patient Partner, Musculoskeletal Research International
Holiday, FL, United States
Chair-Elect
Elizabeth Manias, RPh, RN, PhD
Professor (Research) and NHMRC Leadership Fellow, School of Nursing and Midwifery, Monash University
Kew, VIC, Australia
Operational Lead
Rabbiya Ahmad
Student, Universiti Sains Malaysia
Bahawalpur, PB, Pakistan
Working Groups:
Member Engagement
These activities allow for a variety of members to participate and also facilitates disseminating content in Webinars, Journal Clubs, Conference Sessions, etc.
Co-Chairs
Debra De Silva-Sun, BSc, MA
PhD Student, Lancaster University
Basel, BS, Switzerland
Nora Fayed
Associate Professor, Queen's University
Kingston, ON, Canada
Marjorie Leclerc
Associate principal, Oracle Life Science
Paris, 75, France
BAR LEVY
Founder and CEO, HaBait Shel Bar - Israel's Women's Cancer Association
TEL AVIV, TA, Israel
Melissa Maravic
Vice President, Precision AQ
Charlestown, MA, United States
Nabin Poudel
Postdoctoral research fellow, University of Maryland Baltimore
Baltimore, MD, United States
Radha Sharma
Director, ConnectHEOR
Edmonton, AB, Canada