This study reveals that most people have not been told what data is held about them or how it is managed. In fact, most people do not think about it – but when they do, they realise how important it is.

Care services need to keep a lot of personal information about the people they support. It helps them to understand what care and support people need and want. But it’s also very important that they have the right measures in place to keep that information safe, and that they only use it and share it in the right ways.

In addition, instead of just using paper records, care services are doing more and more digitally. It is therefore getting more and more important for care services to protect their electronic records from cyber crime. This is where criminals try to steal personal or financial information.

This report tells you about a project which spoke to a lot of people who use social care and to

family carers about the information their care services keep about them, and about how their care services use and look after that information. It is about data protection and cyber security.

The project was run by Liverpool Social Care Partnership (LSCP) in 2022. It was commissioned as part of a wider programme to improve data protection and cyber security amongst care services – called Better Security, Better Care.

The project asked people if they knew what information their care services keep about them, and if they knew how that information is used and looked after. It also asked people how important they think managing people’s information is.

This report tells you what the project did, and what it found out. It suggests some things that could be done in the future as a result of what people said to the project.

The report is also available in Easy Read, and as a downloadable PDF.