CASE STUDY
Setting the research agenda for young people with inflammatory bowel disease
TRANSITION
THEME
UNMET NEED
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.
PROJECT CONCEPT / SOLUTION
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 Children and Young People MedTech Co-operative (NIHR CYP MedTech, now known as the NIHR HealthTech Research Centre (HRC) in Paediatrics and Child Health) partnered with the JLA to set up a PSP that aimed to identify and prioritise the top 10 unanswered questions in digital technology for young people (up to 25 years) with inflammatory bowel disease (IBD).
To identify and prioritise the most popular research questions, we carried out two surveys with young people, parents/carers, and health professionals. Surveys were distributed as widely as possible to make sure that we received a diverse and inclusive range of responses. Upon completion of the surveys, the team held a workshop to agree on the final top 10 research priority questions.
The project was guided by a steering group. The steering group included paediatric and adult gastroenterologists and specialist nurses, patient representatives, young people living with IBD, and parents/carers of young people with IBD.
SUPPORT PROVIDED
FUNDING
Our team collaborated with Dr Priya Narula (Transition Theme Lead and PSP Co-Lead) and Dr Naila Arebi (PSP Co-Lead) to secure funding.
TITCH NETWORK
Ou team are disseminating the PSP surveys through the TITCH Network and the NIHR HRC in Paediatrics and Child Health’s extensive networks to ensure widespread reach.
PROJECT MANAGEMENT
Our team provided oversight of the project and managed the project on a day-to-day basis.
FUNDING
Funding for this PSP was provided by the British Society for Gastroenterology and the British Society of Paediatric Gastroenterology, Hepatology and Nutrition. Our team provided project management support in kind.
STAGE OF DEVELOPMENT
BEFORE SUPPORT
BASIC IDEA
CONCEPT DEVELOPMENT
PROTOTYPE DEVELOPMENT
PROTOTYPE VALIDATION
CLINICAL TESTING
REGULATORY APPROVAL
MANUFACTURING
COMMERCIALLY / PUBLICLY AVAILABLE
CURRENT STAGE
BASIC IDEA
CONCEPT DEVELOPMENT
PROTOTYPE DEVELOPMENT
PROTOTYPE VALIDATION
CLINICAL TESTING
REGULATORY APPROVAL
MANUFACTURING
COMMERCIALLY / PUBLICLY AVAILABLE
POTENTIAL IMPACT
Digital technologies have huge potential to capture patient data for research and support patient clinical care. The current technologies in use for IBD are mainly driven by health care providers working with commercial developers to address specific issues. Research to support their benefits and value in clinical practice is sparse.
The top 10 research priorities will offer a road map for health research funders working with commercial digital developers to support:
- Clinical research using digital tools; and
- Research to deliver high quality clinical care that is reflective of patient needs.
NEXT STEPS
The steering group has published the top 10 research priorities in the open source Journal of Paediatric Gastroenterology and Nutrition. The steering group continues to showcase the results of the PSP and the top 10 will influence the research space over the coming years.
PARTNERS