Stuck on repeat - the potential of data sharing in essential services

A year and a bit ago, I wrote a blog called Can sharing lead to caring? which introduced a new multi-year project we were working on exploring data sharing. After lots of hard work speaking to experts in this area, engaging with people with lived experience and coming up with new ideas (as well as a few months off to welcome my daughter to the world!) today we have published the first report of that project. 

Stuck on repeat explores the potential benefits and risks of systems that share information about the support people need across essential services. Crucially it examines what people with mental health problems think about this type of data sharing and what they want to see in place to feel comfortable sharing their information.

We find that this sharing could make a big difference to people’s lives, but there are some key risks that need to be considered. Action is needed to ensure that people can share their needs once, feel in control of their data and know that their information will be treated fairly and kept safe.

When it comes to essential services – energy, water, telecoms and financial services – it can be hard for those of us with mental health to access these services and interact with our providers. This can be due to a combination of symptoms of mental health problems, like difficulty processing information, and poor service design. While there is support available to better access these services, such as the Priority Services Register (PSR) in energy and water, takeup is low. 

Telling one provider that you have a mental health problem and you need support can already be very difficult, both practically and emotionally. Now imagine having to do that for every provider you are a customer of. So we wanted to answer the question – would being able to disclose your support needs once and this then be shared with your providers be a good idea?

When asked to imagine they were in a situation where they needed extra support, 46% of UK adults said they would be likely to use a service to share their needs once across essential service providers. This rises to over half (53%) of people with recent experience (within the last two years) of mental health problems, and nearly two thirds (64%) of those who currently or have previously needed extra support. 

Many members of our Research Community – a group of 5,000 people with lived experience of mental health problems – welcomed the idea that they would only have to share their needs once rather than having to go through the difficult and emotionally draining experience of telling each provider individually.

However, there were also concerns around such a service, with a third (34%) of UK adults saying they would not be likely to use it. For example, nationally, eight in ten (81%) people with recent experience of mental health problems are concerned about not having control over what information is shared. There are also worries among our Research Community about how the data will be used, for example whether it would be used to restrict access to a product or service, and whether it will be stored securely or be vulnerable to hacking. These concerns were held by both those who opposed and supported the idea in principle. 

Several systems already exist to share support needs. For example, information that is recorded on PSRs is shared between the water and energy sectors. However, each of these systems has taken a different approach when it comes to how the data is shared, what is shared, who it is shared with and who runs the system. Some of these approaches more closely match what people with mental health problems generally told us they’d prefer to see. For example, many Research Community members want to be able to control the information they share through a central portal, but not all systems allow this. 

These systems show that sharing support needs is possible, but there are risks if we continue on this path of multiple, independent systems. Instead of one ‘tell us once’ system, there will be multiple. This could mean someone would still have to repeat their story or might believe they’ve shared their needs with all their providers, but only those that are part of their chosen system will receive that information. Additionally, systems might not meet the needs of people with mental health problems, locking people out of accessing support.

We don’t think that multiple, disconnected systems is the right approach and in our report we set out what the alternative blueprints could look like. We also outline the recommendations that are needed to make these blueprints a reality. In an upcoming blog we will explore what these steps are.