We asked participants to share what they thought about the privacy of the data.

Privacy means keeping your information safe and private.

Participants thought that their data was always going to be collected at some stage in their life.

But they worried about their data being used in the wrong way.

They explained there should be more rules about who can use the data.

This includes keeping a record of:

• who used the data
• why they used it.

Participants told us they worry about certain organisations using their data, like other providers.

A provider supports other people by delivering a service.

One participant explained they worry about sharing data about their child.

Another participant who works with providers said they worry about providers:

• not using data the right way

• knowing who the person was because of their data.

They worried that providers might know who to go to so they can get more work.

Participants also worried that:

• governments might use their data in the wrong way

• people don’t understand what data is collected about them.

Participants also told us they worry about their privacy when they share information over the phone.