Eyes on the (data) prize
Five lessons we learnt from developing an international data prize in mental health.
The proportion of people who do not receive support for common mental illnesses is estimated to be as high as 75% in South Africa and 95% in India. In order to address this, Wellcome Trust is launching its first data prize in mental health.
The first prize will focus on carrying out new analysis of existing data to improve support for youth with anxiety and depression — through the lens of Wellcome’s Active Ingredients approach which seeks to understand what works for whom and why. Successful outputs will be new digital tools (for example new software packages, algorithms or scripts) which help address the health problem in question.
A key objective is to ensure outputs are relevant for different countries and continents with distinct socio-economic complexities and differing mental health contexts. We have, therefore, been carrying out an initial scoping phase to assess the feasibility of running a prize in India or South Africa alongside the UK. We have undertaken 25 interviews and carried out desktop research to understand the key players in India and South Africa, engage with potential applicants and understand the data and regulatory landscapes.
Five lessons from the scoping phase
1. The mental health context will differ between countries and attending to these complexities is essential to ensure the prize has maximum impact
Whilst there are some similarities in determinants of mental ill-health across countries, there are also a number of differences and country-specific nuances. Poverty and discrimination are drivers across both countries but, in South Africa, the long-term impacts of apartheid must be considered whereas, in India, caste plays a huge role. The policy contexts and available treatment and support differ between each country, but also within each country, where this can vary substantially by region.
For the prize to be as impactful as possible, it is important to endeavour to understand the mental health context in each country. To this end, co-production and working with in-country teams to draw on a wide range of expertise will be a vital part of the next design phase.
2. The language used to talk about mental health will differ, so communications will need to be tailored
We found that concepts such as ‘mental health’ or ‘depression’ are not always reflected in local perspectives and languages, which may draw on alternative conceptualisations, understandings, and terms, such as being ‘sorrowful’. Further, in South Africa in particular, individuals often face internalised stigma around mental ill-health and hence may not feel comfortable enough to speak openly about depression or anxiety. However, framing mental ill-health as something caused by external factors can be useful, for example through using words such as ‘stressed’.
We want the prize to be as inclusive as possible — and not just focus on communities that talk about mental health more openly or in Western terms. So, we will be working closely with in-country communications specialists and advisors with expertise in culturally specific mental health and with lived experience, to ensure the language and framing is appropriately tailored.
3. Bringing together multi-disciplinary partnerships, requires an understanding of the different contexts participants may be coming from
One of the objectives for the Prize is to reach out beyond the ‘usual suspects’ and support the formation of multidisciplinary teams, but key to the success of this is understanding the different contexts for these individuals.
This includes recognising the drivers within different sectors and finding a way to balance these. For example, the drive for a gold standard of evidence that is academically rigorous can be difficult to balance with the ambition of inclusion and representation when data collection within diverse communities and contexts is highly variable. Equally, there are logistical questions around how we bring together individuals across sectors and how we are mindful of context and power dynamics so that all participants, including young people with lived experience, are empowered to play an equal role. So over the course of our design phase, we will be working with an Advisory Board which is as representative of the diversity of each country as possible, to be able to discuss how we can best create an inclusive environment that enables collaboration.
4. Datasets can hold their own biases, and careful consideration must be taken to ensure a data prize does not exacerbate existing inequalities
As outlined above, in both India and South Africa, the treatment gap (the percentage of individuals not receiving treatment) for common mental illnesses is very high, estimated to be at 95% and 75% respectively. This means that any pre-existing datasets focused on treatment will only include a sub-cohort of the wider population — a group that is likely to be both more affluent and more urban, given the existing inequalities in access to treatment. In rural or ‘underserved’ communities, data may often be paper-based and less easily accessible, meaning that certain communities are poorly represented in data and research.
In order to mitigate against the risk of the data prize exacerbating existing inequalities, we will be undertaking a specific workstream to identify biases in the data and develop a plan in response, including engaging experts in data and research ethics as well as young people with lived experience throughout the design and implementation.
5. Most importantly, data availability and accessibility are crucial in determining the feasibility of a prize
We have had many interesting conversations on the topic of youth mental health, potential areas for research and understanding the value a Prize could bring to each country. But as a key objective of our Prize is to use existing data, data is ultimately the limiting factor. A major component of our scoping has therefore focused on data availability and accessibility, and we will be continuing to work closely with data owners throughout the design phase to ensure that we are able to match target research questions and emerging use-cases with accessible data.
We would like to thank all those who gave us their time to discuss the data prize over this last phase — your insights were invaluable and much appreciated. Following from our research, we are excited to announce that we will be progressing this first prize in South Africa and will be carrying out further work to design the prize in a way that takes our lessons learnt into account.
Over the next phase, we will explore how the prize could be launched in the UK — and will be reaching out to organisations and individuals in the UK mental health space.
If you, or any of your network, would like to hear more or get involved, then please do get in touch with firstname.lastname@example.org.