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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.
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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.
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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.
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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.
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Finding the right moments to explain data to people
We worked with a design agency to research and prototype new ways to develop people’s understanding about patient data.
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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.
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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.
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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.
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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.
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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.
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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.
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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.