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.

Patient-Led Initiative.  The ACTion Council consists of stakeholder groups from patient organizations, health charities, coalitions, non-pharmacologic researchers, government agencies/initiated programs, and industry. Between 60 – 75% of those invited to participate have engaged in research collaboration as patient stakeholders. All three Executive Committee members are also patients who have been pivotal in changing the paradigm of patient involvement in research today.
 
Several groups have recognized a need to unite a global representation of stakeholders to help track patient engagement in research. However, until now, none of these efforts focus solely on the rheumatology space or are led by the patient stakeholders who have been part of its’ history.
 

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.

Our Leadership

Tiffany Westrich-Robertson*

Chief Executive Officer of International Foundation for Autoimmune and Autoinflammatory Arthritis

Maarten De Wit*

Chair for European League Against Rheumatism’s study group for Collaborative Research

 

Cheryl Koehn*

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. 

Dawn Richards*

Vice President of Canadian Arthritis Patient Alliance (CAPA)

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Gerald Major*

President of Canadian Spondylitis Association (CSA)

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Ben Nowell

Director of Patient-Centered Research for CreakyJoints/Global Healthy Living Foundation

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Kathleen Arntsen*

President of Lupus and Allied Diseases Association, Inc. (LADA)

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Jeanette Anderson*

Chair of Lupus Europe

Codruta Zabalan*

Foundation for Research in Rheumatology

Souzi Makri*

European Patients’ Academy on Therapeutic Innovation (EUPATI)

John Esdaile

Scientific Director, Arthritis Research Canada (ARC)

Ade Adebajo*

Versus Arthritis, INVOLVE

Alison Hoens*

University of British Columbia, Centre for Health Evaluation and Outcome Sciences

Kaleb Michaud*

Co-Director or FORWARD: National Databank for Rheumatic Diseases

Clayon Hamilton

Postdoctoral Fellow at University of British Columbia, Arthritis Research Canada

Heidi Bertheussen*

Patient Research Partner at Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA)

Nathalie Bere

Patient Engagement Department of European Medicines Agency (EMA)

Andrea Furia-Helms

Acting Director, Patient Affairs Staff, Office of Medical Products and Tobacco for Food and Drug Administration (FDA)

Krista Woodward

Senior Program Associate for Patient-Centered Outcomes Research Institute (PCORI)

Shawn Keogan

Director of Global Advocacy at Bristol Myers Squibb

Brenda Varney

 Head of Influence Integration at UCB

Jay Bea Smalley

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



Project Support

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 current 2021 sponsor, Bristol Myers Squibb (BMS), for your continued support to help make this vision become a reality. To learn more about how your group can support this initiative, please email tiffany@aiarthritis.org.