Making the patient voice heard in a research consortium: experiences from an EU project (IMI-APPROACH).

摘要: APPROACH is an EU-wide research consortium with the goal to identify different subgroups of knee osteoarthritis enable future differential diagnosis and treatment. During a 2-year clinical study images, biomarkers data are collected from people living analyzed confirm patterns that can indicate such subgroups. A Patient Council (PC) has been set up at project initiation consists five Norway, The Netherlands UK. Initially, this group individuals had learn how effectively work each other researchers. Today, PC strong team fully integrated in acknowledged by researchers as important sounding board. article describes journey looking formal processes involvement – organizational structure, budget, meetings more informal building relationships changing researcher perceptions. It helped improve experience engagement participants providing input protocol ensuring effective communication (e.g. through direct interactions newsletters). Furthermore, helping dissemination results advocacy, overall provides patient perspective Additionally, authors experienced describe intangible benefits shift attitudes sense community purpose for members. Importantly, learnings reported also include challenges, integration researchers’ early phase project. US National Library Medicine, NCT03883568 , retrospectively registered 21 March 2019. This activities lessons learned APPROACH, 5-year European focusing on osteoarthritis, most common form joint disease. EU countries who live osteoarthritis. They use their knowledge life disease own past studies help participate study. In addition, they provide within When started, was didn’t know other. find way together team, ensure into (current members selected members) what needed successfully together, process becoming engaged involved impact have made during beyond. share projects integrate effectively, encourage medical condition activities.