How and why general practice shares your data with NHS Digital for planning and research
NHS Digital Transparency Notice
Under data protection law we must tell you about how we use your personal information. This includes the personal information that we collect from and share with other organisations and why we do so. We do this through Transparency Notices. Read our main Transparency Notice.
This additional Transparency Notice provides details about the personal information that GP practices are sharing with us under our General Practice Data for Planning and Research data collection.
We use the term patient data to refer to personal information in the rest of this notice.
About the GPDPR Data Collection
How Sharing Patient Data with NHS Digital Helps the NHS and You
The NHS needs data about the patients it treats in order 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.
Our 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 We 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.
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 on the NHS Digital website.
Opt Out of Sharing Your NHS Data
To fully opt-out from having your NHS data used for purposes beyond your direct care is a two-step process:
- 1) If you have concerns and want to stop your and your family’s GP data being taken from your GP practice for purposes other than your direct care, you can do so by completing our online Register Your Type 1 Opt-Out Preference form. This is the most urgent step; the deadline to get your form to your GP is 27th August 2021, according to NHS Digital.
- 2) If you want to stop your non-GP data, such as hospital or clinic treatments, being used/sold for purposes other than your direct care (e.g. for “research and planning”) you should complete the following form: NHS Digital’s online National Data Opt-out process.