Can sharing lead to caring? Our new project on data sharing

In our increasingly digital world, data could be said to be king. Every time we visit a website, there are tick boxes asking if we consent to this or consent to that. But how much control do we have over our data, including who can access it? And how often is this data actually benefiting us? 

There are actually a lot of potential ways data could be used for good. That’s why we’re launching a new project that is looking at whether data sharing could benefit people with mental health problems, including what it can do to enhance financial wellbeing. Crucially, we want to understand what people with mental health problems think about this prospect – and what needs to happen in order for people to be happy sharing their data.

We’ll be working on the project over the next few years and will be looking at different elements of data sharing; from sharing vulnerability data between essential services to sharing financial data through open banking. 

We’re not coming into this project completely fresh. Data, including the sharing of it, has been a fairly consistent part of our work. One of the challenges we have tried to address in our work is that there is support available for people’s money and mental health, but often people aren’t made aware of it or face challenges trying to access it.

For example, essential service providers, like banks and energy companies, can offer support to customers to make it easier to access their services. This can include things like sending bills to a trusted person or being able to speak in private when going into a branch. Customers can access this support by letting their provider know about their mental health problem or asking for a reasonable adjustment. 

But we’ve found that there are lots of barriers to doing this, such as not knowing how staff will react or concerns over how the data might be used. This means many people struggle to tell one of their providers, let alone every single company they are a customer of. 

Data sharing could be a way to remove some of these barriers. If you only had to ask for support once and this was then shared with all the companies you need support from, that could be a lot easier. Or if you were eligible for financial support, like a water social tariff, data being shared by the Department for Work and Pensions to your provider could mean you get that support without having to ask. 

Now is a particularly good time to be looking at this topic in more detail. Earlier this year, the previous government announced that it would be starting work on a ‘share once’ support register. This would mean data around the extra support you need from a water, energy or telecoms company would be shared between each of them. Additionally, the new government is looking to expand open banking – which allows you to share your banking data with other companies, for example to get support with budgeting – to other sectors like energy and telecoms. 

While all these developments could be brilliant for people with mental health problems, the thoughts and concerns of this group have not been properly factored in. We explored some of these at the end of last year. We found there were concerns around who has access to data, what the data is being used for, how it’s stored and whether the individual sharing it has control or not. We want to use this project to delve into these concerns more and understand what needs to be done to address them so data sharing works for people with mental health problems and in their interests. If people with mental health problems are not at the heart of these developments then these initiatives risk being doomed to fail.

The first part of the project will explore vulnerability data sharing and we’ll be speaking to our Research Community and experts in this area. Excitingly, we’ll also have a ‘people’s panel’ made up of Research Community members who will help guide us through some of the opportunities and concerns. 

We’ll then host an ‘ideas sprint’ where we bring them and the experts together to come up with solutions that work both for people with mental health problems but also practically. We’ll launch a report with a set of principles around this time next year. We’ll then move on to look at open banking and then how we can apply what we’ve learnt to other areas of data sharing. 

If you are interested in data sharing and want to offer your expertise, reach out to me at [email protected]. If you have lived experience of mental health problems and want to let us know what you think about data sharing, join our Research Community. And if you just want to be kept updated, sign up to our Professional Network. 

This project is funded by the Aviva Foundation. The Foundation aims to support  transformational changes in the financial resilience of those who need it most; helping people to prevent, prepare for, respond to and recover from, financial challenges.