Most people knew very little about the information that care services keep about them, how it is used or how it is looked after.

Most people also said that their care service had not told them how their data is used or kept.

There were some variations. The responses of younger people and carers suggested that they were more aware than older people. In addition, the responses of the people supported by the care provider, Journey Enterprises, suggested they were the most knowledgeable.

This may reflect the fact that Journey Enterprises is understood to have been talking with the people it supports about these things for some time.

Most people (almost 75%) said that, before taking part in this project, they had not thought or worried about what information their care service holds about them.

They also had not thought or worried about how that information is used, shared and looked after.

However, after thinking about the project’s questions, people often said that this would be more important for them in the future. And, as people spent more time talking to the project, and thought more about this, they expressed more concerns.

This suggests that:

  • Care services should proactively tell people what information they use, and how they store and share it safely
  • The wider care sector should encourage people to think about how their information is used, stored and shared, and to ask their own care services what they are doing to keep their information safe.