About the ACTion Council
Patient engagement in research started decades ago in many disease states, but only popularized in rheumatology in the late 1990’s in Canada, the early 2000’s in Europe, and after 2010 in the United States. What began primarily between patient and non-pharmaceutical researchers and government has now advanced to include patient collaboration with a variety of stakeholder groups, including pharmaceutical companies.
Rheumatology Specific. Several efforts to increase patient involvement in research have occurred, typically consisting of overarching guidance and recommendations (all disease groups/umbrella tools). Yet other guidance, and associated Concepts of Patient Involvement (CoPIs) – such as Patient Research Partner (PRP) – were developed within our community and these efforts should be highlighted and built upon. Furthermore, persons living with rheumatic diseases have unique participatory challenges to consider – such as flares, fatigue, and brain fog – so the need for flexible engagement must be considered in this population.
Developing tools that celebrate our prior community successes, and are considerate of these participatory barriers, will improve patient inclusion in the rheumatology space as collaborative efforts continue to evolve.
Chief Executive Officer of International Foundation for Autoimmune and Autoinflammatory Arthritis
Chair for European League Against Rheumatism’s study group for Collaborative Research
President and Co-Founder of Arthritis Consumer Experts/Joint Health (Canada)
Original ACTion Council Members
The original ACTion Council team members pictured below helped develop our first deliverable, the Pathway of Patient Engagement in Rheumatology Research. We thank them for their contributions towards this initiative. As our work evolves, and additional tools are developed, the stakeholders invited ‘to the table’ may change due based on needs for diverse expertise.
Vice President of Canadian Arthritis Patient Alliance (CAPA)
President of Canadian Spondylitis Association (CSA)
Director of Patient-Centered Research for CreakyJoints/Global Healthy Living Foundation
President of Lupus and Allied Diseases Association, Inc. (LADA)
Chair of Lupus Europe
Foundation for Research in Rheumatology
European Patients’ Academy on Therapeutic Innovation (EUPATI)
Scientific Director, Arthritis Research Canada (ARC)
Versus Arthritis, INVOLVE
University of British Columbia, Centre for Health Evaluation and Outcome Sciences
Co-Director or FORWARD: National Databank for Rheumatic Diseases
Postdoctoral Fellow at University of British Columbia, Arthritis Research Canada
Patient Research Partner at Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA)
Patient Engagement Department of European Medicines Agency (EMA)
Acting Director, Patient Affairs Staff, Office of Medical Products and Tobacco for Food and Drug Administration (FDA)
Senior Program Associate for Patient-Centered Outcomes Research Institute (PCORI)
Director of Global Advocacy at Bristol Myers Squibb
Head of Influence Integration at UCB
Global Director, Patient Advocacy and Life Cycle Management, Inflammation & Immunology at Celgene
* Individuals living with one or more rheumatic diseases
Organizations Also Represented By Existing Members
National Institute for Health Research INVOLVE
Outcome Measures in Rheumatology
The original ACTion Council was part of the International Foundation for Autoimmune & Autoinflammatory Arthritis’ (AiArthritis) award-winning A Community Team (ACT) project. Initial support for this project was provided by ACT sponsors Celgene, UCB, and Bristol Myers Squibb. In 2020, the ACTion Council became it’s own initiative, managed by the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis).
We thank our first 2022 sponsors, industry supporter Bristol Myers Squibb (BMS) and Patient Organization supporter Lupus and Allied Diseases Association, Inc. for helping to make this vision become a reality. To learn more about how your group can support this initiative, please email email@example.com.