How can lived experience involvement deliver better outcomes?

Too much mental health research is developed without insights from those with lived experience of mental health challenges. And when attempts are made, they often fall back on tokenism and tick-boxes.

In our work on the Wellcome Data Prize in Mental Health, we are determined to actively involve young people with lived experience of mental health challenges who are most likely to benefit from the prize’s new research. Reflecting on our work so far, we wanted to share our approach and what we’ve learned about the benefits of involving people with lived experience before and during the Discovery stage of the data prize so far.

What is the Wellcome Data Prize in Mental Health?

Social Finance has partnered with global charitable foundation the Wellcome Trust, to launch a data prize in mental health. The prize supports collaborative approaches to research into anxiety and depression in young people by asking what are the active ingredients that make a difference in preventing, treating and managing anxiety and depression in young people. What works, for whom, in what contexts, and why?

To answer this, teams in the UK and South Africa will explore existing longitudinal datasets to find new insights and build digital tools that enable future research in the field. This will be funded through £1.4 million to be awarded across three phases with the top £500,000 prize to be shared between three winning multidisciplinary teams to research and develop a digital tool for mental health research.

In this blog, we reflect on learnings from the lived experience involvement work we have done on the prize.

1. Involve people with lived experience from the start

We created a youth advisory network (YAN) comprised of young people who have experiences of anxiety and depression from both the UK and South Africa and strived to involve members of the network at the various stages of the prize’s development. We found that this end-to-end involvement was essential to ensure that insights from people with lived experience informed our key decisions from project design to delivery. We have outlined below some of the involvement streams that the YAN members have been involved in.

Designing and developing the prize
We embedded lived experience early in the design of the prize, by involving the YAN in co-developing key principles, including the crafting of evaluation criteria. The YAN members were given the unique opportunity to be involved in the design stage of the prize, where they were able to reflect on their relevant lived experience to influence and decide on key design principles for an effective data prize in order to ensure that the voices of young people with anxiety and depression were taken into consideration throughout.

As the prize was launched, we included YAN members in key communication efforts. Notably, one YAN member co-delivered a session on sharing best practice for teams around lived experience involvement. Alongside this, another YAN member led the drafting and writing of a thought piece around teen mental health stigma, which helped to raise awareness around the prize and the wider context of mental health issues in South Africa.

One member of our YAN shared this feedback about their involvement during the design phase of the prize:

Those with lived experience were given a great platform and opportunity to use their experience as a ​‘tool’ and perspective to design the data prize and the process of it.

2. Ensure involvement through shared decision-making

As part of their involvement on our selection panel, the YAN members reviewed proposals as equals and asked probing questions to applicants during pitch presentations.

YAN members involved in the selection panel for the prize were able to consider the teams’ plans for lived experience involvement in their proposed research. They were able to reflect on their own lived experience to judge whether each of the team’s proposed public and patient involvement (PPI) plans were sufficient, inclusive, and accessible.

YAN members were also able to discuss their points of view and challenge other panellists’ points during moderation sessions to discuss teams’ proposals, which was a great way to ensure that the lived experience voice was incorporated in the discussions and decisions.

Two YAN members were included on our prize selection panel which judged the proposals alongside those with expertise in data science, mental health research and ethics. This demonstrates how valuable lived experience expertise is within all decision-making processes across the prize.

When asked about their involvement as part of our selection panel, one of our YAN members said:

I was part of the selection panel for assessing teams’ applications at the original stage and watching/​reviewing presentations at the pitch stage. Here, I think I was able to use my lived experience to consider the team’s plans for lived experience involvement in their research.

3. Make involvement opportunities relevant and meaningful

Part of our focus has been to ensure that the involvement opportunities were relevant and meaningful for the young people involved. To achieve this, we consulted members of the YAN to understand what involvement opportunities interested them most and then allocated opportunities accordingly. With this approach, we found that opportunities throughout the data prize allowed the YAN to use their lived experience in line with their interests, and individuals were able to use their experiences in a range of ways, depending on what suited them best.

Another key aspect to ensure meaningful involvement was to involve people with various backgrounds. One of our YAN members reflected that:

I think Wellcome encouraged people with a broad range of lived experience to be involved. If you narrow down the definition too far, then you’re limiting input and not capturing the full range of relevant experience.

We think that having this flexibility around the specific type of involvement that each YAN member preferred, as well as bringing together a diverse group of people within the YAN, enabled multiple different voices to be heard and to direct the data prize towards the most effective outcomes.

4. See lived experiences as a strength to build on, not a problem to solve

We believe including insight from young people with lived experience really helped to shape our ambition for the prize. We were pleased to see that applicants had carefully considered their approaches to embedding lived experience in their proposals. We also found that involving members of our YAN throughout the selection process helped to assess the depth of the approaches to lived experience involvement and responses to wider evaluation criteria across the proposals.

Many of the individuals involved in the YAN reflected that during their involvement, they found that their lived experience was seen as a strength, and they felt encouraged and confident to share their thoughts and opinions, which in turn made them feel valued in their roles.

This was reflected in the feedback from one of the YAN members:

I came into the data prize solely from a lived experience perspective, which was empowering in advocating for youth mental health and working to do better…It was what I referred back to during discussions and it helped to get a more personal perspective on the prize.

What’s next for lived experience involvement in the prize?

Just as it is important that young people with lived experience of mental health challenges were involved in the planning and selection stages of the prize, it is integral that youth insights continue to be embedded throughout its delivery.

While each team in has included an element of lived experience involvement in their research, it is important that teams have the opportunity to connect and learn from one another to enable the best involvement practices. Therefore, Social Finance and Wellcome will facilitate a Community of Practice to enable cross-team learnings around lived experience involvement. These informal sessions will be an opportunity for teams to connect with each another specifically about lived experience involvement during the discovery phase of the prize whilst supporting Wellcome to learn more about what models of lived experience involvement work best in different research contexts.

We very much look forward to the continued involvement of young people with lived experience of mental health challenges within the data prize. If you are interested in following this journey, you can do so by checking the latest updates on the Wellcome Data Prize in Mental Health website.