Abstract
Background Between 2014 and 2016, the Barbara Ansell National Network for Adolescent Rheumatology (BANNAR) commissioned research to explore young people's rheumatology research priorities and beliefs about research involvement. The next phase of this work has been to establish a UK-wide research advisory group, Your Rheum, to involve 11–24 year olds with rheumatic and musculoskeletal diseases (RMDs) more effectively in shaping research.
Objectives To describe our experiences of developing a UK-wide research advisory group, for young people with RMDs, using both face-to-face meetings and online involvement approaches.
Methods From September 2016, we recruited young people to the group using several approaches: including the previous research study database, through BANNAR members, through UK charities, such as Arthritis Care and via social media. To tailor options for involvement, young people were recruited to contribute to both face-to-face meetings and via online channels.
Results Eight young people attended Your Rheum's first meeting in October 2016, where they discussed how they would like the group to work. Thirteen young people have been engaged online via a closed Facebook group, monitored by the Your Rheum facilitator. Key challenges in establishing the group have included developing age-appropriate communication approaches to appeal to the range of ages involved, devising ways of ensuring online members remain engaged with the group, and finding appropriate tasks for the group to be involved with, that are both suitable and aligned with research project timings. This involves working closely with young people, health professionals and researchers.
Conclusions There is both a need for young people's involvement in research and a desire from young people themselves to do so. Expansion of the online network and involvement activities will allow young people across the UK to have a valuable input into research, regardless of location.
Objectives To describe our experiences of developing a UK-wide research advisory group, for young people with RMDs, using both face-to-face meetings and online involvement approaches.
Methods From September 2016, we recruited young people to the group using several approaches: including the previous research study database, through BANNAR members, through UK charities, such as Arthritis Care and via social media. To tailor options for involvement, young people were recruited to contribute to both face-to-face meetings and via online channels.
Results Eight young people attended Your Rheum's first meeting in October 2016, where they discussed how they would like the group to work. Thirteen young people have been engaged online via a closed Facebook group, monitored by the Your Rheum facilitator. Key challenges in establishing the group have included developing age-appropriate communication approaches to appeal to the range of ages involved, devising ways of ensuring online members remain engaged with the group, and finding appropriate tasks for the group to be involved with, that are both suitable and aligned with research project timings. This involves working closely with young people, health professionals and researchers.
Conclusions There is both a need for young people's involvement in research and a desire from young people themselves to do so. Expansion of the online network and involvement activities will allow young people across the UK to have a valuable input into research, regardless of location.
| Original language | English |
|---|---|
| Pages | 190 |
| Number of pages | 1 |
| Publication status | Published - 15 Jun 2017 |