• Public attitudes on patient data for planning and population health

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

    Read the research
  • What Words To Use

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

    Read the research
  • Guide to explaining the use of health data

    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.

    Read and download the guide
  • Quick reference guide to UPD resources

    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.

    Use the quick reference guide
  • Easy Read Guides: accessible information about health data

    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.

    Download the guides
  • Data saves lives animations

     

    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.

    Watch the animations
  • Trustworthy use of patient data

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

    See our recent thinking
  • What happens to health data: a guide to large datasets

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

    Download the materials
  • Summary of public attitudes to the use of data

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

    Understand public attitudes
  • Examples of public and patient engagement

    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. 

    Best practice for public engagement
  • Insights from Black & South Asian people on patient data

    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.

    Read the research
  • Primary care professionals’ views on health data

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

    Read the research
  • Public views on third-party use of NHS 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. 

    Read the research and key findings
  • Finding the right moments to explain data to people

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

    Learn about the research
  • Explaining how patient data informs health information

    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.

    Dig into the findings
  • The best words to explain patient data

    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.

    Find the best words to explain data
  • A guide to co-producing accessible health information

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

    Use the guide & resources
  • A new approach to decisions about data

    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.  

    Find out about learning data governance
  • Putting transparency into practice

    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.

    Tips for transparency in practice
  • Acknowledging the use of patient data

    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.

    Use the data citation
  • UK media reporting on health data stories

    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. 

    Review the analysis
  • What counts as a 'public benefit' for data use?

    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.

    Explore the findings
  • Identifiability demystified

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

    Explore the guide