Research and resources

All our resources are explained in this one guide, to make them easier to find and share. It will be updated in response to feedback, so let us know if you have suggestions.

Our animations show how patient data is used to improve health and care, and how it is kept safe. They are available for anyone to use under a CC-BY licence.

The language used to explain patient data is often complex and confusing. We did some research to find the best words to explain patient data in a way that's accurate and accessible.

We commissioned research to find out what the public believes makes a makes a fair health data partnership between the NHS, and researchers, charities and industry. 

Transparency is important for creating trustworthy systems for managing data but there isn't a common understanding of what it means. Following a workshop with data custodians, patients and researchers we produced some tips.

People are more likely to support access to data if there is a public benefit. But 'public benefit' is rarely defined. We worked with Involve and the Carnegie Trust to explain the tensions between the risks and benefits of data sharing. 

A number of studies have explored public attitudes towards the use of data. We've pulled them together and drawn out some themes. 

There are lots of good examples of how to engage the public with the issues around patient data. We've explained some key ones - get in touch if there's one we should add. 

It's important to recognise when projects or research have used patient data. Patient advocates at use My data developed a citation and tested it with patients. We encourage everyone to use it.