You can choose whether your confidential patient information is used for research and planning.

 

Who can use your confidential patient information for research and planning?

It is used by the NHS, local authorities, university and hospital researchers, medical colleges and pharmaceutical companies researching new treatments.

Making your data opt-out choice

You can choose to opt out of sharing your confidential patient information for research and planning. There may still be times when your confidential patient information is used: for example, during an epidemic where there might be a risk to you or to other people’s health. You can also still consent to take part in a specific research project.

Will choosing this opt-out affect your care and treatment?

No, your confidential patient information will still be used for your individual care. Choosing to opt out will not affect your care and treatment. You will still be invited for screening services, such as screenings for bowel cancer.

What should you do next?

You do not need to do anything if you are happy about how your confidential patient information is used.

If you do not want your confidential patient information to be used for research and planning, you can choose to opt out securely online or through a telephone service.

You can change your choice at any time. To find out more or to make your choice visit nhs.uk/your-nhs-data-matters or call 0300 303 5678

 

NB: deadline to opt out moved from 23 June 2021 to 1 September 2021

 

The NHS needs data about the patients it treats to plan and deliver its services and to ensure that care and treatment provided is safe and effective. The General Practice Data for Planning and Research data collection will help the NHS to improve health and care services for everyone by collecting patient data that can be used to do this. For example patient data can help the NHS to:

• monitor the long-term safety and effectiveness of care
• plan how to deliver better health and care services
• prevent the spread of infectious diseases
• identify new treatments and medicines through health research

GP practices already share patient data for these purposes, but this new data collection will be more efficient and effective.

This means that GPs can get on with looking after their patients, and NHS Digital can provide controlled access to patient data to the NHS and other organisations who need to use it, to improve health and care for everyone.

Contributing to research projects will benefit us all as better and safer treatments are introduced more quickly and effectively without compromising your privacy and confidentiality.

NHS Digital has engaged with the British Medical Association (BMA), Royal College of GPs (RCGP) and the National Data Guardian (NDG) to ensure relevant safeguards are in place for patients and GP practices.

 

NHS Digital purposes for processing patient data

Patient data from GP medical records kept by GP practices in England is used every day to improve health, care and services through planning and research, helping to find better treatments and improve patient care. The NHS is introducing an improved way to share this information - called the General Practice Data for Planning and Research data collection.

NHS Digital will collect, analyse, publish and share this patient data to improve health and care services for everyone. This includes:

• informing and developing health and social care policy
• planning and commissioning health and care services
• taking steps to protect public health (including managing and monitoring the coronavirus pandemic)
• in exceptional circumstances, providing you with individual care
• enabling healthcare and scientific research

Any data that NHS Digital collects will only be used for health and care purposes. It is never shared with marketing or insurance companies.

 

 

What patient data NHS Digital collect?

This collection will start from 1 September 2021. Patient data will be collected from GP medical records about:

• any living patient registered at a GP practice in England when the collection started - this includes children and adults
• any patient who died after the data collection started, and was previously registered at a GP practice in England when the data collection started

We will not collect your name or where you live. Any other data that could directly identify you, for example NHS number, General Practice Local Patient Number, full postcode and date of birth, is replaced with unique codes which are produced by de-identification software before the data is shared with NHS Digital.

This process is called pseudonymisation and means that no one will be able to directly identify you in the data. The diagram below helps to explain what this means. Using the terms in the diagram, the data we collect would be described as de-personalised.

Image provided by Understanding Patient Data under licence.

NHS Digital will be able to use the same software to convert the unique codes back to data that could directly identify you in certain circumstances, and where there is a valid legal reason. Only NHS Digital has the ability to do this. This would mean that the data became personally identifiable data in the diagram above. An example would be where you consent to your identifiable data being shared with a research project or clinical trial in which you are participating, as they need to know the data is about you.

More information about when we may be able to re-identify the data is in the who we share your patient data with section below.

 

The Data NHD Digital collect

We will only collect structured and coded data from patient medical records that is needed for specific health and social care purposes explained above.

Data that directly identifies you as an individual patient, including your NHS number, General Practice Local Patient Number, full postcode, date of birth and if relevant date of death, is replaced with unique codes produced by de-identification software before it is sent to NHS Digital. This means that no one will be able to directly identify you in the data.

NHS Digital will be able to use the software to convert the unique codes back to data that could directly identify you in certain circumstances, and where there is a valid legal reason. This would mean that the data became personally identifiable in the diagram above. It will still be held securely and protected, including when it is shared by NHS Digital. 

 

NHS Digital will collect

• data on your sex, ethnicity and sexual orientation
• clinical codes and data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals and recalls, and appointments, including information about your physical, mental and sexual health
• data about staff who have treated you

More detailed information about the patient data we collect is contained in the Data Provision Notice issued to GP practices.

 

NHS Digital Does not collect.

• your name and address (except for your postcode in unique coded form)
• written notes (free text), such as the details of conversations with doctors and nurses
• images, letters and documents
• coded data that is not needed due to its age – for example medication, referral and appointment data that is over 10 years old
• coded data that GPs are not permitted to share by law – for example certain codes about IVF treatment, and certain information about gender re-assignment.

 

 If you do not want your identifiable patient data (personally identifiable data in the diagram above) to be shared outside of your GP practice for purposes except for your own care, you can register an opt-out with your GP practice. This is known as a Type 1 Opt-out.

Type 1 Opt-outs were introduced in 2013 for data sharing from GP practices, but may be discontinued in the future as a new opt-out has since been introduced to cover the broader health and care system, called the National Data Opt-out. If this happens people who have registered a Type 1 Opt-out will be informed. More about National Data Opt-outs is in the section Who we share patient data with.

NHS Digital will not collect any patient data for patients who have already registered a Type 1 Opt-out in line with current policy. If this changes patients who have registered a Type 1 Opt-out will be informed.

If you do not want your patient data shared with NHS Digital, you can register a Type 1 Opt-out with your GP practice. You can register a Type 1 Opt-out at any time. You can also change your mind at any time and withdraw a Type 1 Opt-out.

Data sharing with NHS Digital will start on 1 September 2021.

If you have already registered a Type 1 Opt-out with your GP practice your data will not be shared with NHS Digital.

If you wish to register a Type 1 Opt-out with your GP practice before data sharing starts with NHS Digital, this should be done by returning this form to your GP practice. If you have previously registered a Type 1 Opt-out and you would like to withdraw this, you can also use the form to do this. You can send the form by post or email to your GP practice or call 0300 3035678 for a form to be sent out to you.

If you register a Type 1 Opt-out after your patient data has already been shared with NHS Dig

The NHS needs data about the patients it treats to plan and deliver its services and to ensure that care and treatment provided is safe and effective. The General Practice Data for Planning and Research data collection will help the NHS to improve health and care services for everyone by collecting patient data that can be used to do this. For example patient data can help the NHS to:

• monitor the long-term safety and effectiveness of care
• plan how to deliver better health and care services
• prevent the spread of infectious diseases
• identify new treatments and medicines through health research

GP practices already share patient data for these purposes, but this new data collection will be more efficient and effective.

This means that GPs can get on with looking after their patients, and NHS Digital can provide controlled access to patient data to the NHS and other organisations who need to use it, to improve health and care for everyone.

Contributing to research projects will benefit us all as better and safer treatments are introduced more quickly and effectively without compromising your privacy and confidentiality.

NHS Digital has engaged with the British Medical Association (BMA), Royal College of GPs (RCGP) and the National Data Guardian (NDG) to ensure relevant safeguards are in place for patients and GP practices.