3 key learnings about lived experience involvement in the MindKind study
A part of Wellcome Trust’s vision is a world where no one is held back by mental health problems. So we have been working on how to give researchers the tools they need to find better ways of intervening in depression, anxiety and psychosis so that people experiencing these mental health challenges can thrive.
Wellcome commissioned Sage Bionetworks and a consortia of researchers, technologists and young people with lived experience of mental health challenges in India, UK and South Africa to explore the technical, ethical and regulatory challenges of collecting new forms of data in new ways.
Using a prototype mobile app and a series of deliberative democracy engagements, the team have collected a rich and nuanced set of evidence about how young people feel about different approaches to the collection and use of data about their lives and mental health.
The team was committed to foregrounding the perspectives of young people with lived experience of depression and anxiety in every aspect of the work. This piece gives a short summary of lived experience involvement in the MindKind study, followed by three key lived experience learnings taken from the project as a whole.
What is lived experience involvement?
Traditionally, mental health research has been conducted without the input of those who experience mental health challenges. Arguably, this means that studies are less reflective of researched groups and can risk strengthening exclusions which enforce the divide between academics and communities. Ultimately, this can lead to less than effective research, dissemination and implementation.
Wellcome are committed to meaningfully involving those with lived experiences of mental health challenges in their work. Such involvement recognises that those with lived experiences of mental health challenges have a unique form of knowledge and can apply this to positively shape decisions across the research cycle.
What did the MindKind team do to embed lived experience perspectives in the study?
In the MindKind study, Sage Bionetworks (who led the project), grounded their work in a youth-adult participatory research approach to involve young people with lived experiences of mental health challenges as equal partners throughout the study.
The team not only included academics, researchers and data scientists, but also engagement specialists working alongside youth with lived expertise of anxiety and depression. Youth with lived expertise were embedded throughout MindKind as colleagues and equals, from strategic decision-making to leading grassroots engagement and co-authoring academic papers.
To lead lived experience involvement, the team hired Professional Youth Advisors (PYA) in India, South Africa and the United Kingdom, who could dedicate a significant amount of time to planning and delivering youth engagement. These PYAs were responsible for developing and facilitating sub-groups of young people in each country, also known as Young People’s Advisory Groups (YPAG). These YPAGs were engaged throughout MindKind to shape discussion and decision making around key areas such as data governance, data usability, and data collection in the study. Young people were also involved in co-authoring academic papers resulting from the study.
Finally, each YPAG contributed members to another youth engagement group — a Global Youth Panel — which was also supplemented by an ad hoc International Youth Panel convened by the University of Washington. You can read a more in-depth article on this infrastructure here.
What we learnt about lived experience involvement in complex programmes
What worked well?
Confronting digital inequities
The MindKind Study was conducted across three geographic sites which brought their unique geographies, languages, and levels of accessibility. Lived experience involvement in MindKind was largely facilitated digitally. Whilst this provided some opportunities for improved access, it also meant that some youth found it harder to engage.
Online meetings require access to a digital device with stable internet connection. Within some global contexts this was particularly difficult as some young people did not have ready access to the internet and required extra financial support for data to participate. Furthermore, internet availability would disappear due to ‘load shedding’ which restricted electrical power across the country. All of these challenges meant that synchronous online engagement wasn’t possible in all contexts.
To overcome this, platforms like WhatsApp were used to facilitate asynchronous participation and some young people received financial support to purchase data. Finally, some meetings were undertaken in-person. Overall, latent digital inequalities manifested in the study which required adaptable and agile thinking to ensure many young people were able to be involved in MindKind.
What could have been improved?
Having a central point of contact
Complex global studies always require effective project management and support. Similarly, it is important that lived experience involvement is effectively coordinated so it has the best chance to improve research decisions and direction.
Throughout the MindKind study, we realised that lived experience involvement requires clear channels of communication as well as opportunities to identify and share key learnings across research sites. Ultimately, this would have helped to develop a community of practice, enabling PYAs to be more confident, comfortable and coordinated in their approaches to involvement.
What remains a challenge for future programmes?
Closing the feedback loop
In some cases, the insights of those with lived experiences of mental health challenges are extracted and never acted upon, whilst a research team can technically say they enabled lived experience involvement. This dishonesty risks causing harm and widening existing exclusions.
Sage recognised that it was integral to ensure that feedback loops between lived experience insights and decision making were properly closed. PYAs used platforms like AirTable to record YPAG insights which were then sent to the relevant project leads. From this, project leads provided feedback about how insights were considered and whether they had impacted decision making. PYAs then relayed this to their groups and project leads also personally reconnected with groups to share how their knowledge had been used to shape the study.
Challenging extractive dynamics within lived experience involvement is essential to moving beyond tokenisation. Through small steps, the MindKind study attempted to close this feedback loop to demonstrate the importance and weight of lived experience expertise in the study as a whole. However, this is an issue that remains to be developed further to ensure that mental health research cultures can move towards mutual and equitable decision-making.
Conclusion
Lived experience involvement is a key discipline within mental health science and it aims to improve research relevance, reflection, and outcomes. In a complex project like The MindKind Study, it is essential that lived experience involvement is embedded at the core.
Whilst this is truly reflected in MindKind, it is important to recognise how involvement can evolve and improve with ongoing learning. It is only through open and honest reflection that we can celebrate our wins and also look forward to a better future in which mental health science is truly impactful, participatory and equitable for all.
You can read about Wellcome’s focus in mental health here as well as how we meaningfully embed lived experience involvement in our programmes.
