Shape the future of IBS research!

Update July 2023

Our Priority Setting Partnership (PSP) for IBS has now been completed. This PSP sets out the top 10 research priorities within IBS in the UK and Republic of Ireland and can be viewed here.

WHAT IS A PSP?

The James Lind Alliance (JLA) helps set up Priority Setting Partnerships (PSPs) for a wide range of diseases. The purpose of this PSP is to identify and prioritise the unanswered questions in the area of IBS. We aim to have a final output of the top ten research areas needed in IBS put in priority order. The PSP process brings together patients, their carers, doctors, nurses, scientists, researchers, dietitians and other health professionals all with an equal voice.

WHO IS RUNNING THE PSP?

Guts UK charity and the British Society of Gastroenterology (BSG) are co-funding this PSP.  

THE PSP STEERING GROUP:

Each PSP has a Steering Group of up to 16 people. Up to 8 are medical professionals in the field of IBS and the others are the ‘lay’ members or experts by experience, as we like to call them. These ‘lay’ members have either been personally affected by IBS or cared for/have a loved one with IBS. These are the people we now want to recruit. This is your chance to shape the future of IBS research. This has never been done for IBS before and will be a huge step forward for families affected by this misunderstood and underfunded disease.

This Steering Group meets monthly (at a time yet to be co-ordinated) and leads on the PSP activities, with a vital role of reaching out to inform other people within the wider IBS community, enabling everyone to make their contribution. We want to involve and engage as many voices as possible in the process to represent all people affected by IBS.

PSP PROCESS: 

It is expected that the process will take 12 – 18 months in total so anyone interested in being a lay member of the steering group must be able to make this time commitment. 

What we ask of Steering Group Members. You will need to commit to: 

• Meeting online every month (dates will be confirmed). 
• Prepare for meeting in advance, including reading documents.  
• Listening to others, being respectful and be able to include difference perspectives. 
• Sharing values of fairness and transparency. 
• Typical duration of the PSP is 12–18 months. 
• Attend a final (celebratory!) meeting in person to confirm the top 10 list.   

WHAT YOU CAN EXPECT FROM US 

We will commit to: 

• Listening to and valuing the patient voice.  
• Ensuring all parts of the IBS community are represented. 
• Effective communication and co-ordination from Guts UK charity. 
• Giving advanced notice for meetings and papers delivered in a timely manner. 
• Regular updates and communications to keep you in the loop. 
• At the end of the PSP, we will use the list to find more funding for research into IBS.  

Your contribution will be a vital part of the future research programme so vitally needed for IBS in the UK.

HOW TO APPLY: 

Please write a brief summary (no more than approximately one page) providing the following information. The easiest way to do this is by filling in the form below, but you can also call Helen West on 020 7486 0341, email Helen on hwest@gutscharity.org.uk or post to Helen West, Guts UK, 3 St Andrews Place, London, NW1 4LB.

• Your name.
• Your contact details (phone and email).
• Your ethnicity and the region in which you’re based (it is important that all communities and ethnicities are represented in the PSP).
• Which type of IBS have you been diagnosed with?
• What is your experience of IBS?
• Why would you like to be involved? 

Applications for the steering group are now closed, but everybody will have their chance to give your valuable input. Sign up to updates here.