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.
