The ACTion Council was established to retrace the history of patient engagement in rheumatology and record pivotal Concepts of Patient Involvement (CoPI), tools, and initiatives that have shaped its’ past and can help strengthen projects in the future.
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 has now advanced to include patient collaboration with a variety of stakeholder groups, including industry and government.
Led by the people who have helped shaped patient engagement in this space, 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.
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 were formed by the patient stakeholders who have been of pivotal part of its’ history.