Setting the research agenda for young people with inflammatory bowel disease
Research topics are usually chosen by researchers. However, researchers may not be fully aware of the issues and uncertainties that matter most to families and patients.
Priority Setting Partnerships (PSP) are projects where health professionals, patients, and parents/carers work together to identify and prioritise unanswered questions that can be addressed by future research projects. PSPs are organised by the James Lind Alliance (JLA).
NIHR CYP MedTech partnered with the JLA to set up a PSP that aims to identify and prioritise the top 10 unanswered questions in digital technology for young people (up to 25 years) with IBD.
To identify and prioritise the most popular research questions, we are carrying out two surveys with young people, parents/carers, and health professionals. We are distributing the surveys as widely as possible to make sure that we receive a diverse and inclusive range of responses. After these surveys, we will hold a workshop to agree the final top 10 research priority questions.
The project is guided by a steering group. The steering group includes paediatric and adult gastroenterologists and specialist nurses, patient representatives, young people living with IBD, and parents/carers of young people with IBD.
STAGE OF DEVELOPMENT BEFORE WORKING WITH NIHR CYP MEDTECH
SUPPORT PROVIDED BY NIHR CYP MEDTECH
NIHR CYP MedTech collaborated with Dr Priya Narula (Transition Theme Lead and PSP Co-Lead) and Dr Naila Arebi (PSP Co-Lead) to secure funding for this PSP.
NIHR CYP MedTech are disseminating the PSP surveys through the TITCH network and NIHR CYP MedTech’s extensive networks to ensure widespread reach.
NIHR CYP MedTech is providing oversight of the project and managing the project on a day-to-day basis.
Once the final workshop has taken place, the top 10 questions will be published and disseminated.
The top 10 questions will be used to shape future research aiming to develop and evaluate new digital technologies for young people with IBD.
Funding for this PSP was provided by the British Society for Gastroenterology and the British Society of Paediatric Gastroenterology, Hepatology and Nutrition. NIHR CYP MedTech is providing project management support in kind.
Last updated: 18 May 2022