Reflecting on the Global Mental Health Databank Project, Lived Experiences and Youth Participation

The Global Mental Health Databank (GMHD) is an exploratory project asking whether it is possible to build a user-controlled databank that holds rich longitudinal data at scale from different parts of the world that could inform interventions for anxiety or depression in 14–24-year-olds.

The Wellcome Trust’s Mental Health team have commissioned a prototyping phase to be completed by January 2022 by Sage Bionetworks and a consortium spanning the United States, South Africa, India, and the United Kingdom.

As a part of my Lived Experience Consultancy with the Mental Health team I am on the GMHD project team to aid the transition of youth user participation from theory to action. In this article I offer some thoughts on how the GMHD has developed over the last six months alongside the factors which have helped the team to deliver and reflect upon the complexities of youth user involvement.

Lived Experiences and Youth Participation in the GMHD

Most of the time, those whose data is held in databank aren’t involved in the development and use of the technology. Similarly, mental health research has largely overlooked the insights and knowledge of those with lived experiences of the topic. The GMHD looks to tackle both of these issues by giving young people with experience of mental health challenges a central role in shaping how the prototyping study is designed, how and what data is collected, and how data is ultimately used. In the GMHD, the team is attempting to put experiential knowledge on equal footing with scientific and technological expertise.

There are several key features of youth user participation in the GMHD as represented in the diagram below.

• Each country site has hired or is in the process of hiring a full-time professional youth advocate who will support the coordination, facilitation and implementation youth user participation.
• Each site has convened or is in the process of convening in-country youth panels: groups of young people who will share their views and insights across a range of project areas as they develop.
• An ad-hoc international panel of youth has also been convened to ensure that the GMHD could progress while other sites developed their necessary infrastructure, temporarily taking the place of the multinational young adult panel as listed below.

Reflection 1: Centring Lived Experiences and Youth Participation from Application to Deliverables

Lived experiences and youth participation were central from the very start of the GMHD project from recruitment and interviewing to being enshrined in project deliverables. This meant that the team were able to think more deeply about how to ensure meaningful youth participation.

As a lived experience consultant, I was involved in the recruitment process by reviewing project proposals and interviewing shortlisted applicants. I asked about applicants’ experiences of involving and consulting with youth, how youth participation pertains to this project, and what obstacles they envisage during delivery. Throughout this process, my viewpoints, questions, and knowledge were valued by the Mental Health team and I felt like a genuine part of the decision-making process whilst ensuring that lived experiences and youth participation remained key to the project.

Lived experiences and youth participation were included in the project deliverables to further embed these factors into the fabric of GMHD. In doing so, the importance of lived experiences and youth participation transitioned into the delivery of the project itself wherein the Mental Health team and Sage Bionetworks were able to create better accountability for how the GMDB would involve and centre youth.

Reflection 2: Lived Experiences, Language, and Legal Infrastructures

My next reflection revolves around how project teams work together to define and develop youth participation infrastructure.

As I have outlined previously, the terminology and language associated with lived experiences can have different meanings and importance across contexts. Therefore, with a project spanning three continents and a range of settings, it was necessary to confront potential contestations in how the project team approach lived experiences so as not to assume and project understandings derived solely from academic spaces in the Global North. In doing so, the GMHD project team were able to understand how lived experiences of mental health challenges were being approached in this study and were therefore able to approach youth participation and recruitment in a more cohesive way.

Unforeseen legislative, legal, and logistical challenges emerged surrounding youth panel recruitment, data sharing, and representation. While some in-country panels have been convened, others are still being developed which meant that project progress risked delay. The team were quick to recognise these challenges and were able to quickly adapt to organise an ad-hoc international youth panel coordinated by the project team based at the University of Washington’s Department of Global Health. This group were able to give initial insights on data governance, collection, and use intended for the GMHD. Youth user participation in an international project will undoubtedly produce unforeseen obstacles, but the GMHD team approached this in a calm, collected, and conscientious way to ensure that the project could progress whilst youth insights and knowledge remained central.

Lived experiences and youth user participation is challenging even during smaller projects, but Sage Bionetworks and their partners have demonstrated it is possible to pivot at scale in a way that maintains the voice of lived experience.

Reflection 3: Engaging Diverse Panels of Youth in GMHD

My next reflection concerns what actually happens when youth are sat around a (virtual) table and are ready to engage with the details of the GMHD project.

Having coordinated ad-hoc international and in-country youth panels, the manner in which these youth are approached is essential to ensuring they can authentically engage and contribute their insights. Topics such as data governance and data collection are notorious for their jargon and often inaccessible language. When engaging with youth, it cannot be guaranteed that all participants are bringing the same knowledge of technical topics into the discussion. It is therefore critical that all materials are as accessible as possible for youth across different contexts. In these situations, The GMHD project teams, were able to quickly recognise that their approach to topics needed reflection when engaging with a non-specialised audience.

By developing more accessible approaches to complex topics found in the project, youth were able to develop their knowledge on data governance, collection, and other areas, in order to best leverage their insights to the project at hand. Rather than relaying and regurgitating, the ad-hoc and in-country youth panels became a potential space for shared learning and reflection. This has allowed for youth to ask important (and tricky) questions to project leads whilst offering their knowledge to shape the GMHD more widely.

Conclusion

To conclude, the last six months of the GMHD project have centred lived experiences and youth participation in a number of ways. From application and selection to the development of the project itself, youth insights and perspectives have been instrumental to ensuring that the GMHD is responsive and relevant to youth and wider research communities. These processes have not been without their challenges which have promoted thoughtful and ultimately positive reflections throughout the project team. Whether related to semantics, infrastructure, logistics, legislation, logistics, and engagement, youth participation in a project of this global scale presents many an opportunity to learn and grow now and into the future.