What you need to know

Everyone should be able to find out how patient data is used and why, what the safeguards are, and how decisions are made.

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  • Why is it important to use patient data?

    There is huge potential to use patient data for care and to improve health, care and services across the NHS. The information can be used to help:

    • improve individual care
    • understand more about disease
    • improve diagnosis
    • develop new treatments
    • plan NHS services
    • improve patient safety
    • evaluate government and NHS policy.
    Why is patient data used?
  • How is patient data used?

    Patient data must be kept safe and secure, to protect your confidentiality.  

    It’s important everyone should be able to find out about how data is used, including having answers to key questions:

    • What happens to patient data?
    • How is data kept safe?
    • Who can access patient data?
    • How are decisions made?
    • Can I be identified from the data?
    • What are the risks?
    • What choices do I have?
    How is patient data used?

Why do we need to talk about patient data?

Hear people explain why it's important to use patient data and why we need to talk about it more. 

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Patient data saves lives: animations

We've produced a series of animations to explain why it's important to use data to improve patient care.

Watch the series

Frequently asked questions

Everyone in England should be able to access summary information from their GP records online. However, the number of people using this system is low, and the information that is available varies between different GP practices. If you want to access your health records online, speak to reception at your GP practice.

At the moment, very few people have online access to hospital records. The Government has committed that by April 2018 everyone will have access to an online personal health record that includes information from all of their health and care interactions. This is an important goal that will help us feel empowered to manage our care better.

Read how patient access to their medical records has transformed care from a patient's perspective and GP's perspective

You can find out more here:

It is essential that patient data is kept safe and secure, to protect your confidential information. There are four ways that privacy is protected:

  • by removing identifying information, particularly your name and contact details
  • using an independent review process to make sure the reason for using patient data is appropriate
  • ensuring strict legal contracts are in place before data is transferred
  • implementing robust IT security.

Find out more about the safeguards.

A new national data opt-out was introduced in May 2018, following recommendations from the National Data Guardian. People can opt out of having their confidential patient information shared for reasons beyond their individual care, for example for research and planning.

Find out more about the national data opt-out.

NHS Digital, the central repository of NHS information, is not allowed to sell data for profit but operates on a cost recovery basis. It is allowed to charge for the cost of processing and delivering the service, but not for data itself. The charge depends on the type of application, amount of data requested, and the amount of work that NHS Digital will need to do.

Individual NHS Trusts will enter into different arrangements when working in partnership with companies, depending on their requirements and the services that are offered.  

As new digital technologies develop, we are beginning to understand more about the value of data. While people may feel uncomfortable with the idea of the NHS ‘selling’ data, there would also be concerns if valuable data is given away to companies for free. There needs to be much more discussion about how the NHS and patients can benefit from the unique resource of NHS data. For example, if patient data is used to develop a new algorithm, should the NHS get access to that service at a reduced rate? Should the NHS be able to make a profit from commercial access to data?

Patient data saves lives: Diabetes

Mandeep is looking forward to her first baby, but she’s been struggling to keep on top of her diabetes, and finds the constant testing stressful. Data from other women with diabetes helps to improve Mandeep's care and patient data about her will help the care of others too. 

Find out how patient data makes a difference