Eating Disorders Clinical Research Network - the importance of co-production

Hear from Tom about how the Eating Disorders Clinical Research Network (EDCRN) worked with us on co-production for their project.

Why is co-production important?

Co-production is crucial to make sure that research is worthwhile for people with lived experience – in our case, lived experience of eating disorders. Without co-production, researchers may not choose the most pressing research questions, or they might not go about their research in the best way. By co-producing research with people with lived experience of eating disorders and their loved ones, you stand the best chance of delivering research that will be meaningful and make a difference.

What is your project about (EDCRN)?

Currently it is hard to know who is being seen in UK eating disorder services, or how well patients are doing. This is because different services collect different types of data, and there is no way to pull it all together to get a picture across the UK. Our project is creating a new network of eating disorder services in the UK which will all collect the same types of data from patients and carers. The data will be stored in a secure, central database. This means that, for the first time, we will be able to know who is being seen in services and their outcomes from treatment. The data will be unique because it will bring together different types of information, including questionnaires completed by patients, details about what treatments and services have been used, and physical health information such as blood results. As a result, we hope that the data will help us learn how to tailor eating disorder treatment for individual patients, so that treatment is as effective as possible.

How is Beat involved in your project? What have you found beneficial when working with Beat?

Beat are working with us to provide two lived experience advisory boards – one for adults and one for young people. Beat recruited people to the boards and they facilitate the meetings. In addition, they provide supervision groups and wellbeing checks for board members. Working with Beat has been great because they are really committed to doing co-production in a way that is thoughtful and safe for members of the advisory boards. As a researcher, I particularly appreciate the way Beat consider the wellbeing of board members.

What motivated you to engage in co-production for your research?

In terms of the Eating Disorders Clinical Research Network (EDCRN), the whole project was developed in collaboration with people with lived experience of eating disorders as well as carers. We knew that for the project to be successful, we would need to have strong structures in place for co-production. For example, NHS patients will only want to sign up to be a part of the EDCRN if the way we communicate about the project is clear. Also, we want to make sure that we are choosing the most important research questions to answer using the EDCRN data. Each part of the project requires co-production to make sure that we are doing the best job possible.

What have you learned from this process that you would apply to future projects?

One thing I have learnt is the importance of thinking carefully about how to make advisory board meetings go as well as possible. One thing is to plan well and prioritise the most important topics for each board meeting – there is usually lots of discussion, so it’s easy to run out of time if you put too many things on the agenda. Another thing is to think about the psychological safety of the advisory board meetings. I like how Beat create group agreements with board members and refer to these at the start of each meeting, so that the group rules are clear.

What advice would you give to researchers new to co-production?

The first thing would be to dedicate time to learning about co-production, for instance by attending training and learning about good examples in their field. Secondly, I would encourage researchers to think about co-production and lived experience involvement early on when planning to do research. I would also recommend researchers to allocate a good proportion of time and money within their application to co-production activities.

What advice would you give someone who wants to become an expert by experience?

Firstly, I would encourage people to think about what type of expert by experience work they want to do. Based on that, I would encourage people to look for opportunities. There are lots of different overlapping terms, so when searching for opportunities online, I would use terms like: ‘expert by experience,’ ‘participation,’ ‘co-production,’ ‘PPI’/ ‘PPIE’ and ‘patient and public involvement’. Good places to look include NHS organisations, mental health charities and universities. For funded research projects, these will usually have a project page on a university website. If you find a project that you would like to contribute to, you could always write a brief email to the lead researcher to express your interest in contributing to the project as an expert by experience.

How do you evaluate or measure the success of co-production in your work?

For the EDCRN project, one simple indicator of success is whether we have recruited advisory boards and held three meetings a year. But more importantly, we measure success by whether we are making changes to our project based on feedback from our advisory boards. Therefore, we are careful to keep records of the advisory meetings, and document any changes that we make. At the next advisory board meeting, we then present what we have changed using the format of ‘you said, we did’.