Where are there expert by experience mental health research groups?

By Julie Billsborough

Today we launched our Directory of UK Mental Health Service User and Carer Involvement in Research Groups. I am really pleased to see it live, as I was involved in collating all the information. It took longer than I thought it would!

You can access the Directory by clicking here:

We hope that this directory will help:

  • Researchers to find groups to consult and work with
  • Groups to connect and work with one another
  • Further raise the profile of service user and carer involvement in mental health research

There are 88 groups in the Directory, doing a diverse range of activities to improve mental health research.

The overall aim was to make it easier for people to get involved in mental health research, not as participants but as people driving or involved in driving the research questions, designing studies, collecting data, and disseminating findings.

When we were putting the Directory together we had to decide what groups to include. This had its difficulties as there are so many types of mental health groups. But we needed to focus on groups that had a role in mental health research.

We also needed to decide whether we just included groups, or to include independent service user and carer researchers too. We decided on groups only. We are constructing a separate online discussion forum for individuals to connect with one another. More on that later in the year.

We thought it would be useful to categorise the groups that we found to give people some idea of their role and function. This wasn’t always straightforward but we chose the following categories:

  •  Open consultative groups: Generally, these groups can be approached by anyone to receive feedback about their research ideas.
  • Project-specific groups: These groups are linked to specific mental health research projects, many funded for a time limited period.
  • Institution or initiative-specific groups: The largest category. Many of these groups are attached to university departments or a mental health trust. Some of these are not mental health-specific.
  • Free-standing organisations: These are independent groups in their own right and include service user-controlled research organisations, service user or carer networks, and groups which aim to support public involvement in health research.

We used a variety of resources to develop the directory, including existing contacts, internet searches, and the UK Clinical Research Network: Portfolio Database ( We advertised the project widely as possible via websites, mental health networks and social media. We got in touch with over 200 organisations and individuals. It was a great piece of work to be involved with – I got to talk to lots of interesting people and have learnt a great deal myself about the range of activities experts by experience are involved with across the UK. It wasn’t always easy to get the information we required to build the directory but hopefully what we have summarised will be useful to people across the mental health sector.

Click here to have a look through our Directory. We hope you find it helpful and easy to use. If you have any feedback or would like to add your group to the directory then please email: