AiArthritis logo showing stylized infinite loop symbol in red with black dots, above organization name for International Foundation for Autoimmune & Autoinflammatory Arthritis.

The ACTion Council unites a global representation of key stakeholders in the rheumatology research community to record the history of patient engagement and track its’ continued evolution so efforts are not duplicated, value measurements can be improved, and innovative ideas can be developed from existing successes. 

Led by the people who have helped shaped patient engagement in this space (70% which are person living with rheumatic diseases), the ACTion Council recently completed their first deliverable, the Pathway of Patient Engagement in Rheumatology Research. It aims to trace the evolution of patient engagement in rheumatology research, including identifying historical milestones, novel “firsts”, and tools. Then, as patient involvement continues to popularize and branch off into different directions, we can build on past successes and stay abreast of what is happening in the current landscape.


View the original ACTion Council members and start using the Pathway Tool (and submitting YOUR projects and tools) at https://rheumactioncouncil.org/


AiArthritis is part of the Executive Team and lead Project Manager on this project.


Click the video above to learn more about our first tool, the Pathway of Patient Engagement in Rheumatology Research, which provides helpful tools and case studies for those designing patient-included rheumatology research projects. We hope the Pathway will increase the number of patient voices in research.

Visit, Use, and Submit YOUR Patient-Included Rheumatology Research Project to the Pathway!

Locate Resources & Tools

Quickly identify  existing projects, tools, and guidance to build upon – or evolve to new strategies.

 

Build On Past Successes

Locate initiatives and concepts of engagements already in practice to avoid duplication of efforts and to strengthen value measurements.

Identify Collaborators

Learn more about those leading these efforts and identify potential collaboration opportunities.


Submit Your Work!

Submit YOUR Case Study, Tool, Concept of Patient Involvement, or pivotal 1st project! This is just the beginning - be part of this historic initiative today!

The ACTion Council was established in response to needs identified during our organization's A Community Team (ACT) innovation in research project, where stakeholders from around the world united ("the Roundtable") to discuss the evolution of patient engagement in rheumatology and how we could work together to advance the patient voice in the future.  Download the final Roundtable report.

Funding


The work of the ACTion Council is currently made possible by contributions from our industry stakeholders, who were chosen, as all other stakeholders, based on demonstrated excellence in patient-research collaboration in rheumatology.  At no time will industry representation in the Council exceed 15%; therefore, new industry participants will only be invited to join the Council when and other stakeholders are asked to join.


Thank you to our initial  industry supporters - UCB and Bristol-Myers Squibb and to our 2022 industry supporter Bristol Myers Squibb and first 2022 Patient Organization supporter, Lupus and Allied Diseases, Inc.


*Industry will not participate in any voting, guidance, or decision-making.


If you are interested in supporting the work of the ACTion Council please contact Tiffany Westrich-Robertson at tiffany@AiArthritis.org.




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