Research and resources

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. We’ve brought all our resources together into one guide to make them easier to find and share.  

This guide will be iterated in response to feedback, so please let us know if you find it useful or have suggestions for improvements.

The current vocabulary for the use of patient data in care and research is complex and confusing and this acts as a significant barrier to building confidence. An important part of improving conversations about patient data is getting the words right, in a way that is accurate but also accessible and meaningful.

Understanding Patient Data 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.  

This research was called 'Foundations of Fairness' and was published in two reports in March 2020.  

Transparency is important for creating trustworthy systems for data use. However, there is no common understanding of what transparency means in practice. 

We convened a workshop to find what a shared understanding of transparency might be, with data custodians, users, patients and researchers.

We produced a list of different interpretations of how transparency can be implemented, grouped into what information is provided and how it is conveyed.

People are much more likely to accept or support data use if there is a public benefit. However, 'public benefit' is rarely defined and can mean different things to different people. 

In a project with Involve and the Carnegie Trust, we found that to justify data sharing for public benefit, it must be: 

• purposeful,
• proportionate, 
• and responsible.  

A list of questions was developed to help better assess public benefits of data sharing versus the potential risks. 

A number of studies have explored how people feel about the use of patient data. People are generally comfortable with anonymised data from medical records being used for improving health, care and services, for example through research, provided there is a public benefit. Many are uncomfortable with the idea of companies accessing their health data, and there are particular concerns about information being passed on for marketing or insurance purposes.

A huge amount of good practice already exists on how to best engage the public and patients with issues around uses of patient data. They range from distributing flyers and hosting stalls at local events, to theatre performances and stand-up comedy.  

This section is a work in progress. We want you to get in touch with your examples so they can be added here and shared more widely with the community.

“This work uses data provided by patients and collected by the NHS as part of their care and support.”

We encourage everyone to use this citation on all work underpinned by patient data including publications, event materials and press releases.