We heard this from minority groups, people in care and people receiving Universal Credit.
Many people think that data will only be used against them. In some cases this fear is abstract but others have suffered at the hands of the system, have experienced prejudice in health and care services, and feel the system isn't designed to help people like them. These people are wary of sharing data. The first step to improving this relationship is to acknowledge the existence of these fears and to address them in a genuine way.
People with this data relationship said
Many of us have experienced judgement and discrimination at the hands of the health service. Our negative experiences are real and they stay with our communities.
We want you to earn our trust before we would be willing to share our data. First and foremost we want to be listened to and acknowledged by those in power.
People who haven't experienced discrimination find it impossible to imagine that it exists.
We are most concerned about where the power lies. What happens when people are mistreated and things go wrong? How do we get justice?
So what can we do?
Acknowledging people with this relationship could involve training health workers in bias reduction, building systems for monitoring bias in healthcare decision making, and including the option to opt out of data sharing until trust has been earned. Crucially, governments need to make sincere efforts to listen to and respond to people with negative experiences of the health and care systems.