Discovery notebook: making mental health research more inclusive

Wellcome is committed to transforming mental health research and treatments. To help achieve this, we looked at answering this question:

How might we improve diversity in mental health research so that we can make mental health treatments work for everyone?

We used the discovery process to start thinking about how, when and why this challenge should be approached. 

1. Define the challenge

First, we commissioned some research to understand the problem. Design agency LovedByDesign interviewed and held workshops with young people and researchers across the UK to uncover the barriers to young people’s involvement in mental health research.

We found the challenge was two-fold:

• enabling researchers to include people from all backgrounds into their research
• breaking down the barriers to the BAME (Black, Asian and minority ethnic) community accessing mental health treatment and research.  

We chose to focus on the latter. To capture the initial insights, we developed a map of a young person’s journey into mental health research.

2. Understand the needs of the audience

We commissioned more research to understand the needs of young people from BAME communities. For this, we worked with the research team at Cultural Intelligence Hub who had a good understanding of BAME audiences.

The team travelled across the UK to collect stories from over 70 young people about their experience with mental health services and research. We also spoke to 'influencers', such as religious leaders and youth workers, who play an important role in young people’s lives. 

3. Translate insights into relatable journeys

The insights we gathered were useful but needed to be put into context for us to understand the full extent of the challenge.

We combined the findings from the audience research with the journey map we had developed before. This painted a more detailed picture of the barriers to BAME young people accessing mental health research.

It also helped us move from issues and statements towards opportunities for change.

4. Bring together the right group of people

The next step was to bring together people working on the ground who could help us co-create ways to make change, and check and confirm our insights and thinking.

Creative agency The Liminal Space facilitated a workshop with participants from a diversity of sectors: mental health charities, mental health researchers and clinicians, public engagement specialists and people with lived experience of mental health problems from BAME communities.

5. Use insight cards and personas to stimulate ideas

The Liminal Space brought the research findings to life through insight cards and personas. These included artwork produced by young BAME artists, to ensure that BAME young people’s voices were threaded throughout the workshop. They were based on fictional characters that represented the challenges we heard about from the people we interviewed.

We used the cards and personas to help workshop participants empathise with ideas that were rooted in BAME young people’s experiences.

6. Identify opportunity areas

As a group, we decided to prioritise eight opportunity areas where we felt Wellcome could make a difference in the future. We then came up with ideas for each.

One of our favourite was ‘Air CBT’ – a concept based on the Airbnb model, whereby community spaces such as barber shops and local cafes could be used by young people and mental health practitioners to meet. This would help break down barriers to accessing clinical, unfamiliar spaces.

Be mindful of the data

The data we used was taken from a relatively small sample size. Given the nature of this discovery project, we did not aim to represent whole populations, as longitudinal studies do. It was about rooting our ideas in the audience’s experiences.

Be mindful of the topic

Discussing race, racism and bias is hard. It was important to make sure we had trusted collaborators who can thoughtfully tread these issues with the people we engaged with. There was no one organisation that could help us to get there, so we worked with three different agencies.

That was challenging, but necessary. Cultural Intelligence Hub were the best to make sure the BAME young people we spoke to felt comfortable with sharing their experiences. LovedBy Design put these insights into context, and Liminal Space helped us identify opportunity areas.

Take a systems approach

Without looking at the systems of power that play a role in maintaining the problem, we risked glossing over the fundamental challenges and not getting to the heart of what we were trying to solve. We needed to consider interrelating systems which affect BAME mental health, such as racism, bias, history and economic circumstances. This enabled us to be open to considering opportunity areas such as intergenerational influence and systemic biases in research.

Manage expectations

Discovery work involves many people giving their time, knowledge and personal stories in the hope that change will happen. One of the challenges of discovery is that it produces opportunity areas to follow, rather than solutions (although it may reveal some solution ideas too). In some instances, there may be no clear solution or clear action that might lead to change. It was important that everyone involved came with us on that journey.

By looking at the whole system affecting BAME mental health, this discovery work triggered questions about Wellcome’s role within the system and how we can influence change. These insights will inform our work across Wellcome, including our mental health priority area.

We also hope the resources we’re sharing will be helpful for others working to tackle diversity in mental health research.  

 

We would like to thank all our collaborators and contributors:

Cultural Intelligence Hub, LovedByDesign, The Liminal Space, Sharing Voices, Generation Reform, University College London, Chanua, iWoman Academy, Muslim Women’s Council, MQ, Kings College London, University of Liverpool, Manchester University NHS Foundation Trust, South London and Maudsley NHS Foundation Trust, Greater Manchester BME Network, 42^nd Street, Synergi Collaborative Centre, University of Edinburgh, Young Minds, The Black, African and Asian Therapy Network, Queen Mary University of London.