Background:
In late 2023 and early 2024, the Eating Disorders Clinical Research Network (EDCRN) worked alongside people with lived experience, caregivers, clinicians and researchers to agree the most important data (or: information) for eating disorders services to collect. EDCRN is now working with child and adult eating disorder services across the UK to collect this information, which will help us to understand who is being seen in eating disorder services, the treatments people are getting, what’s working and where there are gaps. The goal of EDCRN is to improve treatments and outcomes for all affected by eating disorders.
The information collected through the EDCRN will be made available (safely and securely) to approved researchers and others wishing to carry out much-needed research into eating disorders. Small grants will be made available to junior researchers wishing to use the EDCRN data in their projects.
EDCRN has and continues to be shaped by people with lived experience and will deliver workshops which will be developed by and with those affected by eating disorders.
This project:
This is an opportunity to join the EDCRN at an exciting stage for the Network and help shape the future of eating disorders research and coproduction.
This Board sits alongside:
As a member of the EDCRN Youth Advisory Board, you will support the research team to develop workshops on coproduction in eating disorders which will be delivered to junior researchers and others working in the field.
You will also help to design a small grant call for researchers who wish to use the data collected in EDCRN to carry out their own research projects.
Tasks may include:
This project is planned and co-led with people with lived experience. It will provide an opportunity for you to gain practical experience with research and come together with like-minded individuals to have your voice heard.
Role description:
Benefits of taking part:
Influence real change - Your experiences and ideas will help shape how eating disorder services and research improve across the UK. In turn, you will help improve the lives of those affected by eating disorders.
Build valuable skills - Develop confidence, communication, teamwork and leadership skills through co-production and collaboration.
Grow your network - Connect with other young adults, researchers and clinicians who value your perspective.
By joining the project, you will also receive:
Who are we looking for?
We are looking for people with lived experience of having an eating disorder, aged 16-21, based in the U.K. All panel members must be in stable recovery of their eating disorder, as defined below:
For anyone with experience of either Anorexia, Bulimia, Binge Eating Disorder, OSFED, or T1DE:
For anyone with experience of either ARFID, Pica, or Rumination:
We recognise that there are various challenges to access support for these feeding and eating disorders, and thus our criteria differs for different experiences.
We want to make sure that our advisory boards are fully representative of the diverse communities across the U.K., and so we are particularly keen to hear from people from people who identify with any of the following:
As with all our work, we are also committed to representing the full range of eating disorders, including the ‘lesser known’ ones. This includes anyone who may not have a formal diagnosis, and inclusive of both long- and short-term eating disorder experiences.
Advisory Board Meetings:
As part of the advisory board, you would meet with fellow members as part of a group of up to ten people. There will be three 2-hour board meetings a year between February and October 2026. All meetings will be held from 5.30-7.30pm and conducted via Zoom.
Beat staff will facilitate meetings and there will also be dedicated staff available to provide any support needed. Beat and clinical staff will also be available for support before and after meetings.
KCL and Beat want to acknowledge the valuable expertise those with lived experience will bring to this project, so all board members will be paid for the time they contribute. Payment for participation in sessions will be £25 per hour in line with the National Institute for Health and Care Research (NIHR) benchmark: https://www.nihr.ac.uk/documents/payment-guidance-for-members-of-the-public-considering-involvement-in-research/27372#citizens-advice-bureau-cab
Want to Take Part?
If you would like to become an advisory board member on the EDCRN project, we would like to invite you to join us at an online information session.
Our information session will be a chance for you to find out more about the advisory board, what will be involved, support available, meeting staff members you would be working with and asking any questions you may have!
We will be having our online information session on:
To register for an information session please complete our sign-up form: Beat & KCL (EDCRN): Information Session – Fill in form
If you cannot attend an information session but would like to know more about the project, please contact Beat’s Co-Production team at coproduction@beateatingdisorders.org.uk.