TikTok Lived Experience Roundtable

Background:

TikTok are consulting with Beat to help improve their platform to make it a safer place for their users and to improve signposting to support services for eating disorders.

This Project: 

Beat are organising two lived experience roundtable groups. One group will comprise of members with lived experience of having an eating disorder and of using TikTok, and the other group will comprise of members with lived experience of caring for someone with an eating disorder who has used TikTok.

Roundtable members will initially meet for one steering group at the start of the project where they will have the opportunity to shape what they would like to discuss during the roundtable meetings.

Roundtable members will then meet for six 2-hour online roundtable meetings, which will be facilitated and notarised by Beat.

Potential topics for the roundtable meetings could be, but are not limited to, algorithms, in-app support resources, eating disorder content masks and content classification.

Role description:

• To bring your own, unique lived experience of eating disorders to contribute towards the project to ensure the voices of service users and carers are heard.
• To work with Beat and fellow lived experience members in the programme.
• Use lived experience in a positive way to make positive changes.
• Contribute ideas, suggestions and actively take part in decision making.
• Be mindful and respectful of other people’s experiences and viewpoints, recognising that each board members’ experience is valid and welcomed.
• Complete any allocated tasks, including reading necessary information, and contribute to group actions.
• Ensure communication is honest and open.
• Challenge assertively and respectfully where appropriate, being mindful and considerate of other people’s feelings.
• Ensure that you uphold principles of equality, diversity and being inclusive.
• Asking for help if required and seeking support to ensure your wellbeing from appropriate Beat members of staff.

Benefits of taking part: 

Becoming a roundtable member is an exciting opportunity to make positive change to the support for those suffering from, or affected by, eating disorders by keeping people safe from online harm across the U.K.

By becoming a member, you will receive:

• A training session delivered by Beat on becoming a roundtable member.
• A chance to make a real positive difference in the lives of others living with eating disorders.
• Opportunities to develop/improve new skills.
• Opportunities to meet and network with other people with lived experience of an eating disorder across the U.K.
• Payment for the time you contribute towards taking part in the board.

Who are we looking for? 

We are looking for individuals who have:

• Lived experience of an eating disorder and using TikTok (aged 18-30)
• Lived experience of caring for someone with an eating disorder who has used TikTok (all ages)

All members must be based in the U.K. and they (or the person they care for) must be in stable recovery of their eating disorder for at least 18 months.

The recovery criteria for members are defined below:

• You can identify potential triggers and have coping mechanisms in place to manage these.
• You are not exhibiting eating disorder behaviours.
• There is no requirement for previous professional support of diagnosis, but if you have had professional support, you must no longer be accessing treatment for your eating disorder.

We want to make sure that our roundtables are fully representative of the diverse communities across the U.K., and so we are particularly keen to hear from people who identify with any of the following:

• Minoritised ethnic, national and cultural backgrounds
• LGBTQIA+ communities
• People with physical disabilities
• Neurodiversity
• Men
• All age groups

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.

Roundtable Meetings: 

As part of the roundtables, you would meet with fellow members as part of a group of 10 people. There will be seven 2-hour meetings a year between January and September 2025, all conducted via Zoom.

Beat Co-Production 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.

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 a roundtable member on this 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 roundtables, what will be involved, support available, meet staff members you would be working with and ask any questions you may have!

We will be having our online information session on:

• 25th of November 6-7pm

To register for an information session please complete our sign-up form: https://forms.office.com/e/TmxS1Ex2BU

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.