Health and social care data strategy: consultation analysis - easy read

Part 1: giving people power

People said the most important things were:

• transparency – being open and honest
• consent – being able to agree or to refuse to your data being used

People want to know:

• what data is collected from them
• how it is stored
• what their data is used for
• who is using their data

This information should be available in clear and accessible formats.

People thought health and social care data was information like a person's medical history including:

• clinical notes from GP and hospital visits
• diagnosis – decisions about what illness or health condition someone has
• treatments offered and if they worked
• test results
• medication and prescriptions
• what vaccinations they have had

Some people thought health and social care data included personal information like:

• name
• date of birth
• contact details
• next of kin or emergency contacts

Some people said they would like to get information that:

• could affect their treatment or care
• would support them to make decisions about their care or how to look after themself

Data that people felt uncomfortable about sharing included:

• sexual health
• mental health
• information that could identify who someone is
• old information that was not about care needs now

People said trust in how data is used could be made better by:

• telling more people how data is used
• information governance- rules about ways of working
• having better data
• staff training in understanding data and how to use it

If people cannot understand their own health and social care data, people thought that legal ways like power of attorney or guardianship could be used.

Power of attorney and guardianship are legal ways to give a person the right to make decisions for you.

Most people supported collecting data to help understand how health and social care services support people with protected characteristics.

People thought this data could also be used for:

• research and ways to find new kinds of healthcare
• making sure staff are working well
• making services better

People thought that data from wearable devices like smart watches or fitness trackers could be useful for:

• checking health conditions
• showing when someone needs support to stop an illness from happening or getting worse

Some health organisations were worried that data collected in this way would not be reliable or useful.