Shape the future of pancreatitis research!

2nd July 2021

Guts UK are incredibly excited to be taking our first steps towards getting the Pancreatitis Priority Setting Partnership up and going. We are now recruiting for 6 members with experience of pancreatitis to join the ‘lay steering group’. This is a unique opportunity to be involved in quite literally shaping the future of pancreatitis research in the UK.

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 acute and chronic pancreatitis. We aim to have a final output of the top ten research areas needed in pancreatitis 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.

This animation from the JLA explains the process.

Who is running the PSP? 

Guts UK charity along with the British Society of Gastroenterology (BSG) and the Pancreatic Society of Great Britain and Ireland (PSGBI) are all co-funding and collaborating on this PSP.  

The PSP Steering Group:

Each PSP has a Steering Group of twelve people. Six are medical professionals in the field of pancreatitis the other six are the ‘lay’ members or experts by experience, as we like to call them. These ‘lay’ members have either been personally affected by pancreatitis or cared for a loved one with pancreatitis. These are the people we now want to recruit. If you have or have had pancreatitis, or care for someone with pancreatitis, this is your chance to shape the future of pancreatitis research. This has never been done for pancreatitis before and will be a huge step forward for families affected by this misunderstood 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 pancreatitis 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 pancreatitis.  

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 pancreatitis 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 pancreatitis.  

Your contribution will be a vital part of the future research programme so vitally needed for pancreatitis 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.
  • Your ethnicity and the region in which you’re based (it is important that all communities and ethnicities are represented in the PSP).
  • What is your experience of pancreatitis? 
  • Have you connected either in person or via social networks with other people in the same or similar situation? 
  • Why would you like to be involved? 

Applications are now closed. But don’t worry, everybody will get their chance to have their input about what they’d like to see in the future of pancreatitis research.

This is a unique opportunity to directly influence future research, it is important that ALL communities and ethnicity is represented hence why we are require answers to our questions.

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