Research and resources

For anyone who wants to create clear, jargon-free explanations of how patient data is used.

  • Guide to explaining the use of patient data

    A guide to help you navigate our resources for explaining how health data is used. It includes key messages and resource links to help you respond to questions and concerns.

    Use the resource quick-guide

  • 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

  • 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

  • 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

  • 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

  • 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

  • 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

  • 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

  • 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