The following two excerpts are taken from documents produced by NHS Digital and explain why they need your pseudonymised data and what it may be used for.

Patient data is used every day to improve healthcare services through planning and research in England, helping to find better treatments and improve patient care.

Why we need your data

It helps to decide what new health and care services are required in a local area, informs clinical guidance and policy, and supports researching and developing cures for serious illnesses, such as heart disease, diabetes, and cancer.

For example, GP data collected as part of the COVID response is being used by the University of Oxford RECOVERY trial, which is looking to find ways to improve the treatment for people with COVID-19.

Why we need a new system

Patient data is already being collected to improve health and care services. NHS Digital has collected patient data from general practices using a service called the General Practice Extraction Service (GPES). This system is over 10 years old and now needs to be replaced.

NHS Digital has engaged with doctors, patients, data and governance experts to design a new and improved system to collect data from general practice that:

• reduces work for GPs so they have more time to focus on patient care
• explains clearly how data is used to help patients feel confident and informed
• means data is collected, stored and accessed in a secure and consistent way

How we keep your data secure

We take our responsibility to safeguard patient data extremely seriously. Data shared by NHS Digital is subject to strict rules around privacy, security and confidentiality and the new service has been designed to the highest standards.

We do not collect patients’ names or exactly where they live. Any other data that could directly identify someone, for example their NHS number, full postcode and date of birth, is pseudonymised before it leaves their GP practice. This means that this data is replaced with unique codes so patients cannot be directly identified in the data which is shared with us. The data is also securely encrypted.

We would only ever re-identify the data if there was a lawful reason to do so and it would need to be compliant with data protection law. For example, a patient may have agreed to take part in a research project or clinical trial and has already provided consent to their data being shared with the researchers for this purpose.

The law allows research projects which need to find volunteers for their research to contact patients directly about taking part in research or a clinical trial if the Health Research Authority has approved the request.

This would also need to be agreed through the Independent Group Advising on the Release of Data (IGARD) and the GP Professional Advisory Group (PAG), which is made up of representatives from the British Medical Association and the Royal College of General Practitioners.

If lots of people opt out the data becomes less useful

If a large number of people choose to opt out then the data becomes less useful for planning services and conducting research. This is a particular problem if people from certain areas or groups are more likely to opt out. If that happens then services may not reflect the needs of those groups or areas and research may reach misleading conclusions.

To see this document in full please visit: digital.nhs.uk/data-and-information

Opting out

If you don’t want your identifiable patient data to be shared for purposes except for your own care, you can opt-out by registering a Type 1 Opt-out or a National Data Opt-out, or both.

These opt-outs are different and they are explained in more detail below. Your individual care will not be affected if you opt-out using either option.

Type 1 Opt-out (opting out of NHS Digital collecting your data)

We will not collect data from GP practices about patients who have registered a Type 1 Opt-out with their practice.

More information about Type 1 Opt-outs is in our GP Data for Planning and Research Transparency Notice, including a form that you can complete and send to your GP practice.

This collection will start on 1 September 2021

If you register a Type 1 Opt-out after this collection has started, no more of your data will be shared with us. We will however still hold the patient data which was shared with us before you registered the Type 1 Opt-out.

If you do not want NHS Digital to share your identifiable patient data with anyone else for purposes beyond your own care, then you can also register a National Data Opt-out.

National Data Opt-out (opting out of NHS Digital sharing your data)

We will collect data from GP medical records about patients who have registered a National Data Opt-out. The National Data Opt-out applies to identifiable patient data about your health, which is called confidential patient information.

NHS Digital won’t share any confidential patient information about you – this includes GP data, or other data we hold, such as hospital data – with other organisations, unless there is an exemption to this.

To find out more information and how to register a National Data Opt-Out, please read the GP Data for Planning and Research Transparency Notice.

To see this document in full please visit: GP Data for Planning and Research Transparency Notice

Further information is available from: nhs.uk/your-nhs-data-matters or by calling 0300 3035678