Research and resources

TEHDAS2 is shaping EHDS guidelines for seamless health data use across Europe - join Understanding Patient Data to share views and help ensure outputs meet needs of citizens, professionals, and regulators.

We commissioned research to find out what members of the public know and think about health data security in direct care, and to shape public-facing explainer resources on this topic.

To make our work more accessible to more people, we have translated our Data Saves Lives animation series, as well as our Using Patient Data for Research animation resource, into the top languages spoken in the UK after English (Polish, Punjabi, Romanian and Urdu) as well as Welsh. 

We commissioned research to find out what members of the public in England think about the data held in their GP records.

We teamed up with researchers at University of Worcester to undertake a desk review and community engagement research to explore the attitudes of Gypsy, Roma, & Traveller communities toward collection and use of their ethnicity data in health services, and to develop recommendations for how we can do this better.

Our survey of some of the key Secure Data Environments in the UK provides information about key topics such as funding, what data is held, and outputs.

Our page on Secure Data Environments/Trusted Research Environments explains how these environments work and provides information about key SDEs/TREs in the UK.

We commissioned research to explore how Integrated Care Systems (ICSs) in England use patient data, and how data can be better used to improve health services.

We commissioned research to find out what members of the public think about the use of patient data for planning and population health.

Developing resources to best explain Trusted Research Environments and Secure Data Environments

A guide to help you explain how patient data is used. It includes an overview of key topics in health data and answers common questions and concerns.

A quick reference guide to the different resources and explainers created by Understanding Patient Data by category, what they cover, and where to find them.

Digital easy-read guides that can enhance equality of opportunity for all citizens to understand and to trust how their personal health and care data is used in health research.

In 2021, UPD commissioned freelance data consultant and author Gavin Freeguard to write a journalistic piece setting out how the R number - extensively used in public policy-making and public discourse during the covid-19 pandemic - was developed and used.

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.

We’re developing our thinking on the characteristics and practices for trustworthy use of patient data. Here we summarise the main elements of trustworthiness.

An introduction to the way that health data is gathered, stored and used in the NHS today.

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. 

A multi-stage project to learn about the views and experiences of Black and South Asian members of the public on the use of health data, and advocate for change.

Research with the Royal College of General Practitioners (RCGP) to learn about primary healthcare professionals’ views and expectations around the use of patient data.

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. 

We commissioned a design agency to research and prototype new ways to develop people’s understanding about patient data. 

We worked with health charities to test out including information about patient data in their guidance, following research showing this encourages awareness of data use.

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.

A best practice guide for co-producing accessible health information with an example from the easy-read guide project.

We're interested in new ways to embed public views in decisions about data. A learning approach to data governance could help facilitate good decision-making over time.  

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.

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.

We funded research into media coverage of health data stories. It looks at which stories have the most cut-through with the public and how coverage changed during Covid-19. 

We teamed up with the National Data Guardian to bring the public into the conversation about how to assess public benefit for data use, and with the Carnegie Trust to explore the benefits and risks of data sharing for public benefit.

The language of identifiability is complex. This resource explains the difference between identifiable, anonymous, and de-personalized data, with examples and imagery.