Shielded Patient List: transparency notice

Our purposes

NHS Digital processes personal data to produce a Shielded Patient List (SPL) of patients in England who have been identified as clinically extremely vulnerable in relation to coronavirus (also referred to as COVID-19).

The shielding programme in England has now ended, which means that those who were previously identified as clinically extremely vulnerable are no longer being asked to shield. However, the list is currently still being held and maintained by NHS Digital as information about those who were previously identified as clinically extremely vulnerable is used by health and social care services to provide care and treatment, to plan health and social care services and to carry out medical research.

Patients on the SPL will receive a letter and email (if an email address has been previously registered with their GP) informing them that shielding has ended and advising them of support that is available to them should they continue to need it.

NHS Digital is conducting a managed closure of the SPL and this Transparency Notice will be updated as appropriate to reflect any further changes in processing personal data as a result of the closure of the SPL.

If you have previously been identified as clinically extremely vulnerable, you can find more guidance about what to do now on NHS.UK and in the guidance from Public Health England.

As someone who was identified as clinically extremely vulnerable you may be prioritised for COVID-19 vaccination. You can read more about how patients are prioritised for vaccination and NHS Digital’s role.

NHS Digital also processed personal data of patients who use the NHS.UK Get Vitamin D Supplements Service. The application service has now closed, we will continue to process data to complete the vitamin delivery activities.

NHS Digital is the controller of the personal data in the List under the General Data Protection Regulation 2016 (GDPR) jointly with the Secretary of State for Health and Social Care, who has directed NHS Digital to collect and analyse data for purposes relating to COVID-19 under the COVID-19 Public Health Directions 2020 (COVID-19 Directions).

A Data Protection Impact Assess (DPIA) has been undertaken and completed for the SPL and is subject to ongoing review as and when the service is revised.

Types of personal data we process

The Shielded Patient List (SPL) contains the name, address, email address (where registered with GP), date of birth, phone numbers, and NHS number of those patients who were identified as clinically extremely vulnerable to coronavirus.

The SPL also includes an explanation of why you were included in the list, which may have been due to a pre-existing medical condition and/or wider risk indicator (please see below for further details).

It also contains the name of a patient's GP practice and the GP practice telephone number, as well as a patient’s contact preferences from their GP record. Where a person requires written communications to be in Braille or large print, NHS Digital will ensure these requirements are applied for national shielding communications from the NHS and the Department of Health and Social Care.

How we obtain your personal data

NHS Digital created the SPL based on data we already hold as the national safe haven for health and care data in England. Further information on how we collect data can be found on our website.

We collect additional data from GP practices in England and from Public Health England about patients determined to be clinically extremely vulnerable, or whose risk status has changed.

We collect information from the Health and Justice Information System (HJIS) to identify patients in detained and secure estates who may be clinically extremely vulnerable if they contract COVID-19. Information about patients who are on the SPL will then be provided back to healthcare clinicians by NHS Digital through identifying those patient records with a flag on the HJIS clinical system.

How the SPL is created

The Chief Medical Officer for England asked NHS Digital to create the SPL as part of our legal functions to collect and analyse data under the COVID-19 Directions.

Patients are included in the SPL if they have pre-existing medical conditions which are considered an indicator of extreme vulnerability to coronavirus.
Patients were also included in the SPL if they have pre-existing conditions which, when taken together with other relevant risk factors (such as the patient’s age, sex, ethnic group, body mass index (BMI) and postcode), are also considered to provide indicators of extreme vulnerability to coronavirus. We used a risk assessment model, known as the COVID-19 Population Risk Assessment (see below), to help identify patients in this category.

Medical conditions which were an indicator of extreme vulnerability

For the SPL the Chief Medical Officers for the UK have agreed the following underlying conditions as an indicator of extreme vulnerability to coronavirus:

solid organ transplant recipients
people with severe respiratory conditions including all cystic fibrosis, severe asthma and severe chronic obstructive pulmonary (COPD)
people with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as Severe combined immunodeficiency (SCID), homozygous sickle cell)
people on immunosuppression therapies sufficient to significantly increase risk of infection
people who have problems with their spleen, for example have had a splenectomy
adults with Down’s syndrome
adults on dialysis with kidney impairment (Stage 5 Chronic Kidney Disease)
women who are pregnant with significant heart disease, congenital or acquired
people with cancer who are undergoing active chemotherapy
people with lung cancer who are undergoing radical radiotherapy
people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
people having immunotherapy or other continuing antibody treatments for cancer
people having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
people who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs

We identify and include patients with these conditions in the SPL based on health and care data held within our data sets. Where applicable, we supplement this data with further information provided by Public Health England, the patient’s GP or hospital specialist.

You can read more about how we do this in the detailed methodology.

Other indicators of extreme vulnerability

The Chief Medical Officer (CMO) for England has also determined that patients with health conditions not listed above may still be at risk of extreme vulnerability to coronavirus if they have a combination of other factors associated with becoming seriously unwell from coronavirus. The CMO has made this determination based on the results of a clinical research project undertaken by the University of Oxford.

Researchers from across the UK, led by the University of Oxford, produced a risk prediction model called QCovid® as part of this project. This combines a number of factors such as age, sex registered at birth, ethnicity, height and weight (to calculate BMI) and specific health conditions and treatments to estimate the risk of catching and becoming seriously unwell with coronavirus.

NHS Digital developed a COVID-19 Population Risk Assessment which used QCovid® and patient data held in existing NHS Digital datasets, to identify those patients with relevant factors or health issues to assess their risk. NHS Digital generated a risk assessment result for each of these patients and those with a result above an agreed threshold set by the CMO were added to the SPL. A cautious approach was taken, so there is a chance that a patient’s risk is lower than the risk assessment estimated.

Information about patients who were added to the SPL in this way was provided to their GP and where appropriate hospital specialist. GPs and hospital specialists can add or remove a patient from the Shielded Patient List at any time and will continue to review whether patients on the List are clinically extremely vulnerable on an ongoing basis, according to their clinical judgement or when a patient requests this.

Read more about the COVID-19 Population Risk Assessment.

For more information on how your personal information is used as part of the COVID-19 Population Risk Assessment see the COVID-19 Population Risk Assessment Transparency Notice.

Maintaining the SPL

The shielding programme in England has now ended, which means that those who were previously identified as clinically extremely vulnerable are no longer being asked to shield. However, the list is currently still being held and maintained by NHS Digital as information about those who were previously identified as clinically extremely vulnerable is used by health and social care services to provide care and treatment, to plan health and social care services and to carry out medical research.

The SPL will currently continue to be updated to ensure it continues to include all patients deemed to be clinically extremely vulnerable to coronavirus (COVID-19).

This work includes considering changes to patient status following a new diagnosis, or change in circumstance, or where a patient is identified as extremely vulnerable by their GP or hospital doctor or through the COVID-19 Population Risk Assessment.

The SPL will also be routinely updated to remove people:

who have died
where a GP or hospital doctor has determined they are not clinically extremely vulnerable
where a GP or hospital doctor has responded to a request from a patient to be removed from the list
who are no longer registered with a GP for NHS care in England, where they have moved out of the country and this has been recorded as an “exit” on their health record

NHS Digital is conducting a managed closure of the SPL and this Transparency Notice will be updated as appropriate to reflect any further changes in processing personal data as a result of the closure of the SPL.

Managing my entry on the SPL

You can request to be removed from the SPL by asking your GP. They will add a low or moderate flag (note) to your record and you will be removed from the SPL within a short period of time (up to two weeks).

Public Health England advises that clinically extremely vulnerable people should now, as a minimum, follow the same guidance as everyone else. For more information read the guidance on protecting people who are clinically extremely vulnerable. For general advice on coronavirus please visit the NHS website.

Read more details here about the timings for information flows between systems which explains the process for updating the SPL and the timings for this.

Who we share your personal data with

We are sharing relevant information from the Shielded Patient List with organisations who have responsibilities for providing care and support to the patients on the List. This includes:

GP practices about their own patients on the List
NHS hospitals about their own patients on the List
healthcare staff in prescribed places of detention (for example prisons) about their own patients on the List
Other NHS organisations, Government departments and local authorities. This included the Cabinet Office who were responsible for providing the Extremely Vulnerable Persons Service. More information about how the Cabinet Office used personal data for that Service, who it shared information with and how long it will keep the information following the closure of the Service is explained in its privacy notice.

We will also use and share information from the shielded patient list for planning, commissioning and research purposes, including clinical trials, relating to coronavirus. This will include sharing information with NHS organisations, government departments, other public authorities and research organisations.

We will only share identifiable information about those patients on the shielded patient list where it is lawful for us to do so and under a terms of release letter which:

details the terms of release and the agreed purposes for which the data can be used
identifies other organisations who may be permitted to use or receive the data and for what agreed purposes
sets out the lawful basis for sharing and using the data
obtains commitments from the recipient to the secure handling and management of the data, including its destruction once the agreed purposes have been met

We will also publish and share data from the List which we have anonymised, so that no individuals can be identified from that data.

This will enable NHS and other organisations to use this anonymous data for statistical analysis and for planning, commissioning and research purposes as part of the response to coronavirus.

To keep patients informed of their risk of complications from COVID-19, as well as to provide relevant advice, guidance and support as and when necessary, information is also shared with national processing partners for the purposes of issuing letters and emails to patients.

Read more details here about the organisations with whom we have shared information from the Shielded Patient List.

How long we keep your personal data for

Data will be processed until the expiry of the COVID-19 Directions which are in place until 31March 2022 (unless extended). Data shall be retained for 8 years from the expiry of those Directions in accordance with the Records Management Code of Practice 2021 and NHS Digital’s Records Management Policy.

Other organisations with whom we share your personal data have obligations to keep it for no longer than is necessary for the purposes for which we have shared your personal data. Information about this will be provided in their transparency or privacy notices which are published on their websites.

For information about how long the Cabinet Office will retain any data we share with them for the purposes of providing the Extremely Vulnerable Patient Service, please see their privacy notice.

How we manage data quality

The information we use to contact clinically extremely vulnerable patients is drawn from existing information held by the NHS in your patient record.

Where this information is identified as incorrect during or as a consequence of providing relevant information to you as a clinically extremely vulnerable patient, the following steps may be taken:

where your NHS registered residential address is identified as incorrect when a letter is sent to you (undeliverable / returned / not known at this address), a flag is set on your patient record to indicate you no longer appear to live at the address registered with the NHS
if no response is received from you or your GP practice is unable to contact you, you will be removed from the practice patient list
other data quality issues raised by the health and care system are managed with the support of the National Back Office

It is important that you ensure your GP has current and accurate information about you including your name, residential address and telephone contact details as well as, where appropriate, your personal email address.

Where we store the data

NHS Digital only stores and processes your personal data for this service within the United Kingdom.

Fully anonymous data, for example statistical data (which does not allow you to be identified), may be stored and processed outside of the UK.

Your rights over your personal data

To read more about the health and care information NHS Digital collects, our legal basis for collecting this information and what choices and rights you have, see how we look after your health and care information, our general transparency notice and our Coronavirus (COVID-19) response transparency notice

We may make changes to this transparency notice. If we do, the ‘last updated’ date at the top of the notice will also change. Any changes to this notice will apply immediately from the date of any change.