68. The essential role of consumers in clinical and health services research: best practice examples from the paediatric rheumatology clinical studies group consumer representatives

Abstract

Aims: The primary aim of the consumer representatives is to provide strategic guidance for the paediatric rheumatology community on how to effectively embed the views of young people, parents, carers and families into clinical and health services research. Background: Consumers' perceptions and experiences should inform clinical research priorities.1 These perceptions and experiences are critical for successful clinical research in a number of ways. For example, identifying the most suitable study outcomes, enhancing trial recruitment and to encourage treatment adherence, both within and outside of clinical research. In turn, it is possible that consumer involvement may enhance expectations and subsequent levels of satisfaction with the trial experience for young people and their families.2 Methods: To effectively represent young people and families living with rheumatic and musculoskeletal diseases (RMDs), it is critical to have a means of ensuring that consumer representatives embody the broad range of views of young people, parents, carers and families. The paediatric rheumatology consumer representatives aim to do this by establishing strong links with external rheumatology stakeholder groups and through consumer research meetings. Results: Consumer activities include attending two annual face-to-face meetings of the clinical studies group (CSG), in addition to a further ten monthly teleconferences. As well as updating CSG members about consumer activities, this is an essential activity for academics and health professionals to engage consumers in shaping their research. In addition, consumers are invited to various research meetings, ranging from identify appropriate patient-reported outcome and experience measures, to stratified medicine workshops. Consumers are also members of various study steering committees and trial management groups, ensuring that the consumer voice is embedded into those research projects, as well as bridging the gap between the research community, consumer groups and charities. Furthermore, consumers comment on various documentation, including trial protocols and participant information sheets and have been involved in formulating three research questions as part of the CSG's research strategy. The top three research priorities were informed by a consumer research study with young people and parents.