FAQ Regarding NHS Data Opt Out
Why do they need this information?
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.
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.
Where will information be coming from?
The NHS collects confidential patient information from:
All NHS organisations, trusts and local authorities (including GP surgeries), private organisations, such as private hospitals providing NHS funded care
Who can access this information?
Research bodies and organisations can request access to this information. This includes:
- University researchers
- Hospital researchers
- Medical royal colleges
- Pharmaceutical companies researching new treatments
Which data will be available?
The collected data includes sex, ethnicity, sexual orientation, diagnoses, medications and information about a patients’ physical, mental and sexual health. It does not cover names and addresses – except for a postcode which is replaced by a unique code generated by de-identification software. Simon Bolton, head of NHS Digital, said all collected data would be protected or pseudonymised before it leaves the GP “to ensure patients cannot be directly identified”.
Will this information be sold?
NHS Digital does not sell data. It does however charge those who want to access its data for the costs of making the data available to them. This is because we are not funded centrally to do this. Charges only cover the cost of running the service and means that those organisations who need access to the data bear the costs of this, rather than NHS Digital. We do not make profits from the service.
NHS Digital will not approve requests for data to be used for insurance or marketing purposes, promoting or selling products or services, market research, advertising.
Which data will not be collected?
- Patient names and full addresses
- Written notes (free text) of any consultations or interactions between patients and clinicians
- Images, letters, videos, or documents
- Medicines, appointment, or referral data over ten years old
- Legally restricted data such as IVF treatment or gender reassignment
How is confidential information protected?
Every organisation that provides health and care services will take every step to:
- Keep data secure
- Use data that cannot identify you whenever possible
- Use data to benefit health and care
- Not use data for marketing or insurance purposes (unless you request this)
- Make it clear why and how data is being used
How will confidential data be protected?
Your confidential patient information is looked after in accordance with good practice and the law.
All NHS organisations must provide information on the type of data they collect and how it’s used. Data release registers are published by NHS Digital and Public Health England, showing records of the data they have shared with other organisations.
Every organisation that provides health and care services will take every step to keep data secure, use data that will not identify you wherever possible, use data to benefit health and care, make it clear why and how data is being used.
How do I make my choice?
You can stop your confidential patient information being used for research and planning by opting out if your data can be shared.
If you’re happy with your confidential patient information being used for research and planning you do not need to do anything.
Any choice you make will not impact your individual care.
You can opt-out online here
You now have until 30th September 2021 to make a choice regarding this (This has been delayed from March 2020)