Over the past two years, Understanding Patient Data have produced a large number of tools and resources intended to help anyone who wants to understand and talk about how health and care data is used.

Our resources provide a starting point for people who are looking to create clear, jargon-free explanations of how and why patient data can be used, especially for purposes beyond care. Patient data use is complex and our aim is to help demystify data and build people’s confidence to discuss it in a way that is meaningful to patients and publics.

What is the resource quick-guide?

This guide brings together UPD resources into one place and acts as a short, simple summary of much of our work. It has been developed following feedback from our supporters, who wanted to be able to share UPD work with others more easily and save time when trying to find the right resource for their needs.

From engaging animations, to guidance on the best words and case studies, all UPD resources are freely available under a CC-BY licence. This guide is designed to quickly signpost you to where you can find them.  

Knowing how to start the conversation  

For those less familiar with issues around patient data, the guide is structured around how to address the most common questions patients and publics have about the uses of patient data. Brief summaries are followed by links to relevant resources for those who want to find out more.   

Key messages throughout the guide reflect some fundamental points to consider when talking about how patient data is used. These key messages have come about as we’ve developed our resources and they’re intended to support people in championing best practice. 

We want your feedback!

This guide will be iterated in response to feedback, so please let us know if you find it useful or have suggestions for improvements. We’re keen to hear about how easy it is to use and other things you might need from this guide.

Read the resource quick-guide.  

Tell us what you think by emailing hello@understandingpatientdata.org.uk