A Priority Setting Partnership (PSP) in collaboration with the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSGHAN), British Society of Gastroenterology (BSG), the James Lind Alliance (JLA), and NIHR Children and Young People MedTech Co-operative.
Who are we?
We are a group of patients, carers, healthcare professionals, and researchers who are passionate about improving the care and quality of life of people living with inflammatory bowel diseases (IBD), such as ulcerative colitis and Crohn’s disease.
Together, we are collaborating on a project called a Priority Setting Partnership (PSP) to identify the top 10 research priorities for digital technology in adolescents and young persons with IBD.
What are we doing?
There are huge opportunities to transform IBD care with digital technologies but we need to understand the impact that technologies will have and how to best use them. Digital technologies may include apps, podcasts, websites , social media, and patient-controlled electronic medical platforms.
We are asking people up to and including the age of 25 who are affected by IBD, their families, carers and friends, and health and social care professionals to help us identify the top 10 questions that need to be answered by research in this area.
Why do we need your help?
We would like to hear from you if you are:
Your views will ensure that we focus on the needs of adolescents and young persons living with the condition and guide future research.
What do I have to do?
We are asking you to complete a short 10 minute survey. You don’t have to be an expert in technology to take part. Choose the 10 most important unanswered research questions about the use of digital technologies based on your experience of living with IBD or supporting someone with the condition.
What happens after the survey?
We will look at all the responses to the survey, and those that are deemed the most important by each individual group will be taken forward into a final prioritisation workshop. In this workshop we will come up with a list of the top 10 research priorities which will be publicised to researchers and organisations that fund IBD research, and we would welcome you to help us put these into order of priority. Please leave your contact details at the end of survey 2 if you wish to be involved in this part.
What will happen with my information?
By taking part in this survey, you give us consent to use your anonymised responses and to publish these in our project report. We take your privacy seriously so we will not be able to personally identify you.
You may also leave contact details at the end of the survey if you would like to continue to help with this project (this is optional). Personal contact details will be kept confidential.
