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Understanding how your health data is used

On 25 May 2018, NHS England and NHS Digital will introduce an opt-out programme allowing people to opt out of having their personal health information used for research and NHS service planning. Ian, from our research team, gives us the facts.

Why is your data collected for research and why is it important?

Your data can help doctors and researchers understand more about disease. If small amounts of data from many people are linked up and pooled, researchers and doctors can use this to develop new ways of predicting or diagnosing illness and help identify new ways to improve care for everyone. It can help develop new treatments, monitor safety and plan better health services. 

Is your information identifiable?

Your data is annoyomised as much as possible. Often, only numbers and codes can be seen. Personally identifiable data can only be used if you give your permission or where required by law. Some data will be used to produce statistics that are published monthly by the NHS, for example A&E waiting times or vaccination coverage. Your data cannot be used for insurance or marketing without your consent.

How is your data protected?

There are strict controls on how your data is accessed. Researchers are only given the minimum amount of your data needed and data will be anonymised where possible. Researchers must prove that the data is stored securely, and a legal contract is signed before any data can be transferred.

What choices do you have about your data being used?

From May 2018, you'll be able to choose if your identifiable data can be used for research and NHS planning purposes. You'll just need to update your preferences on the NHS website. You can change your mind at any time.

Check out this short video that explains what happens to your data:

You can find out more about the national opt-out programme on the Understanding Patient Data website.

Go to the Understanding Patient Data website


Ian is our head of research and has worked at the BLF for a decade. He previously studied biochemistry and worked in the medical research charity sector.

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15 March 2018