During the meeting, which was attended by a global representation of stakeholders, attendees discussed several issues, including:
- Lack of rheumatology specific project tracking, including global sharing of resources;
- Overlap and/or different usage of existing established patient involvement concepts (terminology);
- Blended conferences, which unite all disease groups, can blur focus regarding the collaborative needs of our unique population.
- Misuse of current concepts of patient involvement, published within the rheumatology community but the term being used differently by other communities – resulting in confusing value measurements (i.e., Patient Research Partner/PRP)
- Lack of tracking past and current initiatives can lead to duplication of efforts.
At the conclusion of the meeting, attendees agreed that by preserving what our rheumatology community has already accomplished to date, and continuing to track initiatives as they evolve in the future, it should be easier to build on prior successes, avoid duplication of efforts, and identify potential collaborations. As a result, the inclusion of patient involvement in rheumatology research could improve and the demonstrated value of patient inclusion could increase.
As a result, the ACTion Council was formed as part of the A Community Team (ACT) II project. However, in 2020, it became it’s own independent initiative.
Watch the video of project leader, Tiffany Westrich-Robertson from International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) talk about how the ACTion Council – and how the Pathway deliverable – all started.