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
- 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
Webinars
- Patient Involvement in Value and Health Technology Assessment (V/HTA)
- Patient Engagement in Research: An ISPOR Definition
- Qualitative Content Analysis Training
- FDA Patient-Focused Drug Development (PFDD) Guidance - Part 1
- FDA Patient-Focused Drug Development (PFDD) Guidance - Part 2
- FDA Patient-Focused Drug Development (PFDD) Guidance - Part 3
Presentations
- ISPOR 2024 “Patient-Centered Research” Special Interest Group Joint Open Meeting
- ISPOR Europe 2023: Are We Patient-Centered Yet? Patient Engagement and Patient-Centered Research in HEOR
- ISPOR 2023: Using Clinical Outcome Assessments (COAs) in Your Research Study Does Not Necessarily Make It Patient-Centric
Leadership
Chair
Nan Qiao, MSc, PhD, MBBS, MPH
Director, Merck & Co. Inc
Lansdale, PA, United States
Past Chair
Jessica Roydhouse, PhD, BA, MPH
Select Foundation Senior Research Fellow in Health Services Research, Menzies Institute for Medical Research, University of Tasmania
Hobart, TAS, Australia
Chair-Elect
Angie Botto-van Bemden
Patient Partner, Musculoskeletal Research International
Holiday, FL, United States
Operational Lead
Birgitta Termander
European Organisation for Rare Diseases (Eurordis)
Tvååker, N, Sweden
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
Nora Fayed
Associate Professor, Queen's University
Kingston, ON, Canada
Sam Llewellyn, BSc
Director, Patient Centered Research, Vitaccess
Richmond, LON, United Kingdom
Elizabeth Manias, RPh, RN, PhD
Professor (Research) and NHMRC Leadership Fellow, School of Nursing and Midwifery, Monash University
Kew, VIC, Australia
Radha Sharma
Senior Consultant (Director), ConnectHEOR
Edmonton, AB, Canada