Tips for writing about patient data

Introduce the concept of patient data at the beginning of any reporting and do not assume people know what it is. Consider using some of the recommended language to explain patient data on our website.

Be clear up front about what sort of data is being referred to. Is the data identifiable, de-identified/pseudonymised or anonymous? Where does the data come from? Is it routinely collected patient data or is it from another source (e.g. a research study)? Have the people the data is about consented to their data being used or shared? (E.g. consented cohort studies like the UK Biobank). Remember that ‘patient data’ is not a legally defined term.

Consider that public awareness and understanding is low. Where possible, give background to why data is being used, how decisions are made, and what the intended benefits of using data are.

Where possible, use specific examples and case studies. People generally struggle to understand what patient data is and how it is used, and specific examples can help bring the topic to light.

Cover the things people are most concerned about. For instance, cover how data is kept safe, how identifiable the data used is, who can access it and what the public benefit is

Acknowledge that the use of patient data is never risk free. Explain what the potential risks could be and what, if anything, is done to mitigate risk. Consider consulting our web page on how data is kept safe and what the risks are.

Be clear about what is and isn’t allowed when it comes to the use of health data, particularly when reporting on a controversial topic. People know very little about the rules governing health data and often want to know what the law and regulations are, who has made the decision and on what basis something is allowed. Consider consulting our explainer page on the laws and policies governing data.

Try to put the issue at hand into perspective and contextualise risk, particularly in the case of negative stories about the use of patient data,

Signpost to further information for those who would like more information about patient data, such as the Understanding Patient Data website and NHS England’s web page about data.

Remember there are different policies that apply in each country in the UK and specify in your reporting what part of the UK a story applies to e.g. only England has the National Data Opt-Out.

Avoid jargon where possible, and where precise terminology is needed for clarity (e.g. Confidential Patient Information or pseudonymisation), follow this up with a lay explanation. For more information, see our resources and our what words to use work.