Case study
equity and inclusion, ethics and governance, quality practice, partnership working

OCD and the Brain: co-producing an online toolkit

updated on 23 Oct 2024
5 minutes

OCD and the Brain brought together people living with Obsessive-Compulsive Disorder (OCD), University College London (UCL) researchers, OCD charities, and facilitators. They shared experiences of OCD, discussed the brain’s role in OCD, and aimed to make the latest brain research on OCD more accessible and relevant for those affected.

A case study from Joanne Thomas, Public Engagement Manager, Wellcome Centre for Human Neuroimaging. 

Image from the OCD and the Brain website, created by Boyle and Perks

People with lived experience of OCD were at the heart of this project: they were central to the project design, collaborated with researchers in creative workshops to exchange ideas, and were part of a team co-developing an engaging online toolkit throughout its development. Together the team co-created a resource that they hope will be accessible and useful to the OCD community as well as towards shaping future research in this area. The project was funded and supported by: 

  • UCL’s Wellcome Centre for Human Neuroimaging
  • Max Planck UCL Centre for Computational Psychiatry and Ageing Research
  • The International OCD Foundation (IOCDF)
  • OCD Action
  • Creative Facilitator, Rachel Bower
  • Boyle & Perks
  • Numerous participants with lived experience of OCD
  • University of Tübingen
Initiated by the research team at UCL
Funded by the Wellcome Trust via Wellcome Enrichment Grant

Purpose

This project aimed to hold a space where people living with OCD could come together with people researching OCD to share experiences, take a closer look at the role of the brain in OCD, and make the research in this area more accessible and relevant to the OCD community. The collective set out to create an online toolkit that would share what we know about OCD and the Brain, as well as helpful resources and information about the project and team behind it.

Background

The project came about due to a recognition, by the research team at UCL, that there was a disconnect between the OCD research agenda and the lived experience of OCD. The team concluded that their research likely didn’t resonate or feel relevant and/or accessible to those with lived experience of OCD. As a result, the team committed to exploring ways of taking a co-production approach with those living with OCD, to understand how to better align future research with the needs of the community, and also to co-create helpful OCD resources.

Approach

This project was underpinned by interdisciplinarity, co-production, and intergenerational representation from start to finish. Creative methods were used to produce workshops that were relevant and allowed safe spaces for participants to share their ideas and experiences. 

The use of creative workshops followed by focus groups also ensured that a good number of ideas and volume of input were allowed for, followed by refinement of the final toolkit. The involvement of research centres, OCD charities, and community participants with lived experience of OCD or of providing support for those living with OCD, meant that the direction of this body of work had wide-ranging and relevant input.

The project was split into two consecutive phases:

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Phase One: Creative Workshops

In the first phase, writer and Creative Facilitator Rachel Bower held creative workshops for 9 young people living with OCD, 10 parents of young people with lived experience of OCD, and 3 OCD researchers.

These carefully guided workshops created a space in which the group discussed their OCD experiences as well as ideas and questions they had about OCD and the role the brain plays in it. Findings from these workshops formed the basis of the online toolkit.
Illustration of a lightbulb

Phase Two: Co-production

The next step of the methodology, was the convening of focus groups. These groups involved 10 people (Community Gatekeepers) who have lived experience of OCD and are active within the OCD community, as well as the researchers and charity partners.

This whole collective contributed towards the co-creation of the online toolkit, which included a bespoke animation. Notably, insights from this exploration inspired researchers involved to extend their research themes in new directions.

Evaluation

The project was evaluated in a number of ways. Feedback was collected throughout the workshop sessions and via an in-depth survey at the end, gathering feedback on people’s experiences to inform the project and future work.

Debriefs were held with the researchers to determine how to grow capacity in public engagement, and to identify how to better support the researchers in this kind of work. Feedback was also gained throughout the Community Gatekeeper sessions, where the group obtained iterative feedback during the co-production of resources to continuously improve them. 

Lastly, the team evaluated the success of the final resources via launch events and the response from the participants and partners involved as well as the wider OCD community. 

Some of this evaluation is shared in videos in which members of the research team, charity partners and Community Gatekeepers reflect on the process.

The Importance of the Project Film
Learnings from the Project Film
What Participants most Enjoyed Film

Lessons Learned

Importance of Co-creation

The whole team learned a huge amount from the project, and from all of the participants, partners and contributors involved. It strengthened the team’s capacity to deliver co-production projects, and the team was very happy to have been able to co-create useful and reliable resources that are openly accessible to others living with OCD. Some of the lived experience participants shared how much they would have benefited from this kind of initiative if it had been available when they or their loved ones started to experience OCD.

Impact on Research

Another highlight was the project’s impact on the research team themselves. The project design had intentionally attempted to ‘flatten the hierarchy’; to open up space for people with lived experience of OCD to be seen and treated as equal stakeholders in the work, and for the research team to align their methods and approaches with lived experience. 

This approach of co-production was successful and as a result, involving those with lived experience is now very much on the agenda for the team going forward and has already shaped future research grants. Additionally, the research team hopes to continue working with the OCD charity partners in the future.

Legacy

The co-produced resources will be kept up-to-date, and there is an agreement between the research team and charity partners to review content on a regular basis. The project was designed with this kind of ‘future editing’ in mind to ensure the resources could stand the test of time, but are also adaptable. 

The website (including animation) has also been translated into German, which has opened it up to more people. The research team and charity partners are also committed to continuously sharing this work at conferences, events, and via many other communication channels with the research and OCD communities.

Find out more about the project
Read some of the team's reflections
OCD resources
Watch the animation

Find out more and get in touch

To find out more about OCD and the brain, email Professor tobias.hauser@uni-tuebingen.de or visit the project website: 

Project website

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