Privacy Notice - Annex D

Organisational staff opt-out guidance

This guidance is provided to all staff who may be required to respond to queries about the current data opt-outs available.

Who is NHS England?

NHS England is the national information and technology partner for the health and care system
It provides information and data to the health service so that it can plan effectively and monitor progress, create and maintain the technological infrastructure that keeps the health service running and links systems together to provide seamless care and develops information standards that improve the way different parts of the system communicate
NHS England is the national custodian for health and care data in England and has responsibility for standardising, collecting, analysing, publishing and sharing data and information from across the health and social care system, including general practice

What does it do with the data it collects?

Patient data collected from general practice is needed to support a wide variety of research and analysis to help run and improve health and care services.

While the data collected in other care settings such as hospitals is valuable in understanding and improving specific services, it is the patient data in general practice that helps NHS England to understand whether the health and care system as a whole is working for patients.

Research the long-term impact of coronavirus on the population
Analyse healthcare inequalities
Research and develop cures for serious illnesses

What type of data does NHS England extract from the organisation?

Diagnoses and symptoms
Observations
Test results
Medications
Allergies and immunisations
Referrals, recalls and appointments
The patient’s sex, ethnicity and sexual orientation
Data about staff who have treated the patient

If a patient wishes to opt-out of data sharing, there are two types of opt-out:

Type 1 Opt-out applies at organisational level and means that the patient’s medical record is not extracted from the organisation for any purpose other than for direct patient care.
National Data Opt-out (NDO-O) allows data to be extracted by NHS England for its lawful purposes but it cannot share this information with anyone else for research and planning purposes.

How does a patient opt-out?

Type 1 Opt-out – the patient must inform the practice of their decision and this is coded at the practice locally to their clinical record.
National Data Opt-out (NDO-O) – the patient must do this themselves with NHS England. Unfortunately, this cannot be done by the organisation.

The patient can do this by:

Online service – Patients registering need to know their NHS number or their postcode as registered at their GP practice via: Make your choice about sharing data from your health records
Telephone service 0300 303 5678 which is open Monday to Friday between 0900 and 1700.
NHS App – For use by patients aged 13 and over (95% of surgeries are now connected to the NHS App). The app can be downloaded from the App Store or Google play
“Print and post” Manage your choice

Photocopies of proof of applicant’s name (e.g., passport, UK driving licence etc.) and address (e.g., utility bill, payslip etc.) need to be sent with the application to:

National Data Opt-out
Contact Centre
NHS England
7 and 8 Wellington Place
LEEDS
LS1 4AP

Note, it can take up to 14 days to process the form.

Getting a healthcare professional to assist patients in prison or other secure settings to register an opt-out choice. For patients detained in such settings, guidance is available on NHS England and a proxy form is available to assist in registration.