If I could tell you once - ensuring data sharing in essential services actually leads to caring

This is what a member of our Research Community – a group of 5,000 people with lived experience of mental health problems or for caring for someone – told us in a focus group. They were referring to a system that would share the support needs that people have across essential services. This summed up a lot of what we found in our new report Stuck on repeat on this topic that we published yesterday. 

There’s a lot of support for the idea of being able to disclose that you need support to access essential services or interact with your providers once and this then be shared with the providers you want to know. But there is also a lot of concern people have around how the information will be accessed, stored and used. In this blog, I set out some of the key steps that are needed to ensure that the benefits of this type of data sharing can be achieved, while preventing the very real risks.

As part of our engagement with our Research Community, we co-developed a set of principles for how this data should be shared:

• Informed and dynamic consent – People should be able to give, revisit, and withdraw consent with confidence.
• Control and choice – Individuals should control and have choice over what data is shared, with whom, and when.
• Transparency at every step – Clear information on what data is shared, why, and with which organisations. 
• Ethical and proportionate use – Only the necessary data being shared accurately and only used for agreed purposes, with clear benefits. 
• Strong safeguards and accountability – Robust security, clear rules, and real consequences for misuse.
• Inclusive design to be accessible for all – Should be designed with those with lived experience to ensure it works for everyone.

These principles aren’t just a nice thing to have, but are the essential backbone of this type of data sharing that will help build trust among people with mental health problems. For example, nationally 83% of the public agree that they should be able to change their mind on whether they want their information to still be shared or not. However, we need to go beyond just principles if data sharing is to work for people with mental health problems. In our report we set out several recommendations for how these principles can be embedded into any future system that shares people’s support needs across essential services.

As I outlined in my previous blog, while the existence of several data sharing systems has shown what is possible, there are risks to such variation in approach. The ultimate aim should be to allow someone to share their needs once, feel in control of their data and know it will not negatively impact them. We have identified some alternative blueprints for how this type of data sharing could work. 

To achieve this, the government needs to act. Before the 2024 general election, there was momentum towards cross-sector data sharing with the government setting out plans for a ‘Share Once Support Register’. This would bring telecoms into the energy and water data sharing system. However, these plans have stalled since. The government needs to restart them as a priority, working with regulators, industry, consumer organisations and people with lived experience.

Trust is a key factor in whether someone will share their information or not. In our work, we heard about how this could be built through clear rules and standards. To build trust, the government should work with essential services regulators and the Information Commissioner’s Office – the regulator for data protection – to develop a framework to ensure there are shared standards, accountability and access to redress when things go wrong.

We also know that not everyone will want to share their data. This must be treated as a legitimate choice and essential services need to be inclusively designed so people can still access them even if they don’t share their needs.

We know that creating a network of systems or a single system will take time and effort, but it is essential that we have a guiding star to follow. In the meantime we will be engaging with the government, regulators and industry to highlight why action is needed and start moving in the right direction. We have already launched our report with a roundtable attended by these key stakeholders and we’ll keep the momentum going in the coming months. 

This report is part of a multi-year project looking at data sharing. If you want to be involved with this specific work or our wider project, please contact [email protected].