National Care Service - information sharing to improve care support: regional forums - easy read findings summary

In-person sessions

There were some main themes that came from the events. They are about the ‘about me’ information people can add to their Care Record.

‘About me’ information is about someone’s life and what is important to them. This will help in planning their support and care.

People want to be told about information sharing

People told us they do not know enough about Data Protection laws. They want to know more about their rights to see information and records.

We need to build trust around information sharing

People told us they are worried about who can see their personal information.

Some people are not confident when using computers or the internet. This can make them worried about information sharing.

Some people said they would be happy for their information to be shared if they know it will help them.

The use of the Care Record needs to be person-centred

People want to be respected and supported to make decisions about care.

People want to be able to manage what information about them is shared. They want to be able to decide who can see it.

People want to be able to update what information is shared.

Some people want to have a Care Record to fill in before any social care support is needed. This will help with future planning.

People can change their minds about who their information is shared with. Everyone has different reasons for choosing who can see their information.

Sometimes information can be left out of a record by choice. This might be because it could be upsetting for the person.

Information sharing needs to keep people safe

People need to know what kind of information they should put in their Care Record. They need to know how this will be used.

Sometimes information needs to be shared with people or services in an emergency. This should only happen if it is to keep someone safe.

Some people might need support to help them share their information.

The Care Record and information sharing

People said the Care Record can help make things easier for people. It can save them from having to tell their story again.

The Care Record can be part of person-centred support. It can help make sure a person gets the care that is right for them.

The Care Record can help people to have the same experiences across different services. Good and fast information sharing can mean a person gets better care and support.

Staff need to be supported to share information

People told us that it is important for information to be shared properly and securely by health and social care support staff.

Staff need to know the laws about Data Protection. This will help them to share information in the right ways.

It can be hard for staff to get training about Data Protection. Different organisations share information in different ways.

Some people say staff do not use the information to make care and support better. Some worry that information sharing will mean more work. Sharing information properly is important for keeping staff safe.

Some staff do not feel valued.

Information sharing is not only important for health and social care services.