Moving from design to build — an update on the Global Mental Health Databank study
It’s been a while since we last updated you on the progress of the Global Mental Health Databank so here’s a quick update of where we’ve got to.
For those who haven’t come across the project before, the Global Mental Health Databank is a two-year feasibility study commissioned by Wellcome in partnership with Sage Bionetworks and a team of researchers and young people across India, South Africa, and the UK. The purpose of the project is explore whether it’s possible to create a user-controlled databank that can enable longitudinal investigation into the ‘active ingredients’ that make interventions for anxiety and depression work effectively in 14–24 year olds. The study will collect empirical evidence to show what (if any) forms of data collection, storage, and use could work to enable the needs of the researcher community and those proving their data equally.
The project is broken into four phases:
- Design — developing study design, evaluation metrics and strategy in partnership with young people and the research community
- Build — All preparatory work needed to run the study (aka building a platform with which to test various governance models and data collection approaches)
- Data collection — collecting sample data from 4500 participants using several different data governance models. In parallel, there’ll be a qualitative study using a deliberative democracy approach to gather insights on the various models.
- Analysis — synthesising and analysing all the information and learnings.
At the end of the feasibility study, we are aiming to have an MVP databank along with a wealth of qual and quant evidence to verify the efficacy of a range of data collection strategies and governance approaches. These can be used to decide whether and how to proceed to scaling and releasing the databank for the use of the wider research community.
The teams have been working their way through the design phase and are now moving on to the Build phase. In this post, we’ll cover what we have done and learn in the design phase, and describe what we’re looking to achieve over the next year.
Where we’ve got to so far…
- Establishing lived experience and researcher advisory panels — the team are working towards having a panel of young people with lived experience in every country and a panel of researchers who can contribute to key decisions in the design of the study and databank. Shuranjeet Takhar, one of Wellcome’s Lived Experience consultants has written more about this here.
- Selecting a shortlist of active ingredients to collect data about in the quant arm of the study— the team have selected sleep, positive activities, bodily movement and social connections to focus on in this study. These have been chosen based on the types of data it is feasible to collect with Sage Bionetworks existing technology. We’ll write in more detail about this soon.
- Deciding on the most appropriate data governance models to test — drawing on Sage Bionetwork’s green paper on data governance models for open data and in consultation with the lived experience and researcher groups, the team have developed a structure for exploring different models for a club or trust approach. Meg Doerr and Lara Mangravite from Sage Bionetworks have written more about the approach and governance models being tested here.
- Identifying the participant characteristics — the team has made the decision to focus on collecting data from people from 16 to 24 who have lived experience of depression and anxiety. This means all participants will be able to provide their own consent. However, further work will be planned to understand the complexities and opportunities for collecting the data of minors in a responsible way. We’ll be writing more on this in the coming months too.
- Ethics and regulatory scoping- the ethical and regulatory approval requirements have been scoped and understood for the three universities and countries the team is operating in- UK, India, South Africa, and USA. This is no mean feat and gaining the required approvals will be a huge task over the next phase.
- Qualitative study design — in parallel to the data collection study, Sage Bionetworks are designing a deliberative democracy exercise in order to gather qualitative insights on the approaches to data collection, storage and use.
- Tech requirements — all of these considerations have been brought together to create a clear scope for tech development.
Some key learnings…
- Contracting and other blockers have made recruitment for the lived experience panels hard. But the team have done an incredible job at ensuring they are gaining the perspective of a diverse group of young people for key decisions in the design of the study. The value of having these panels is already really evident. Shuranjeet gives more details in his post.
- Getting everyone on the same page took some time. This is always the case with big projects, but in this case it required the team to develop a shared understanding that the project is not aimed at developing a data set for mental health research, but at collecting empirical evidence about how to collect this kind of data. Sage’s use of the ELSI research framework has really helped this process.
- The teams across the three countries are working really hard to develop a study design that asks questions in a way that is relevant to multiple cultures, but can also able to be harmonised effectively. For example, the appropriate way to ask collect ethnicity data varies hugely between the three regions the project is working in. Differences in national data regulation and institutional ethics boards are also a huge area of focus.
Coming up…
The team is aiming to have everything ready to run the data collection phase by June 2021. Keep an eye out for more updates soon.
