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Shielded patient list: transparency notice
Version 3: 30 November 2020. We process users' personal data in order to provide the shielded patient list for people at high clinical risk from coronavirus. This notice outlines what data is collected, how it is processed, and what we do with it.
NHS Digital has produced a Shielded Patient List (SPL) of patients in England with pre-existing medical conditions which the Chief Medical Officers (CMOs) for the home counties have identified will make those patients clinically extremely vulnerable in relation to coronavirus (also referred to as COVID-19). This means these patients are at a much higher risk of getting complications from coronavirus because of their pre-existing medical conditions.
The NHS is writing by letter, and for those who have previously registered one with their GP, by email, to those patients to let them know that they have been identified as clinically extremely vulnerable and to offer them advice and guidance on reducing their risk of infection from COVID-19 as well as shielding advice for those who live, work or travel to areas where shielding advice is in place.
The letter includes details about the clinically extremely vulnerable person service being provided by the Government, and invites patients to contact this service to register for help and support as and when appropriate to current shielding policy.
NHS Digital will also process personal data when patients use the NHS Digital delivered, NHS.UK Get Vitamin D Supplements Service to request free vitamin D supplements to be issued to clinically extremely vulnerable patients where they have applied for them.
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 have been identified as clinically extremely vulnerable to coronavirus.
It also contains the name of a patient's GP practice and the GP practice telephone number.
How we obtain your personal data
Identifying patients for inclusion in the initial List was carried out by NHS Digital using data we already hold as the national safe haven for health and care data in England. We also collected additional data from GP practices in England, Public Health England about those patients who were determined to be clinically extremely vulnerable, or for whom their risk status has changed. NHS Digital was asked to do this by the Chief Medical Officer for England as part of our legal functions to collect and analyse data under the COVID-19 Directions.
A list of underlying medical conditions which were considered to indicate extreme vulnerability to coronavirus was agreed with the Chief Medical Officers for the UK. This list identified the following pre-existing conditions which doctors consider will make those patients clinically extremely vulnerable in relation to coronavirus:
- Solid organ transplant recipients.
- People with specific cancers:
- 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
- People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD.
- People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell).
- People on immunosuppression therapies sufficient to significantly increase risk of infection.
- Women who are pregnant with significant heart disease, congenital or acquired.
More evidence is now available than at the start of the pandemic about which people are more likely to become very unwell as a consequence of COVID-19 infection. As a result, the UK Chief Medical Officers have instructed that two new conditions be included in the “high risk” criteria:
7. Adult patient with Down’s syndrome.
8. Adult patient with kidney impairment (Stage 5 Chronic Kidney Disease).
Adult patients with these two new conditions are now being identified and added to the SPL by their GP or hospital specialist respectively. The national methodology will also be updated to identify people with these conditions.
The health and care data NHS Digital held, and the data which we obtained from the other organisations identified above, was then analysed by NHS Digital with reference to these pre-existing medical conditions. This analysis identified those patients who are considered to be the most clinically vulnerable to coronavirus.
Read more details here about how this was done in the detailed methodology.
The shielded patient list is now being updated with information about those additional patients considered to be clinically extremely vulnerable who are also identified by their GP and by their hospital doctor.
The criteria for those additional patients who may also need to take shielding measures due to their pre-existing medical conditions will also be updated from time to time by the Chief Medical Officers in the UK.
We are also collecting 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 List will then be provided back to healthcare clinicians by NHS Digital through identifying those patient records with a flag on the HJIS clinical system.
The List will also be updated to remove people from the List:
- who have died
- where a GP or hospital doctor tells us that a person is not clinically extremely vulnerable
- and to remove people from the List who have specifically asked to be removed from the List
You can request to be removed from the list by asking your GP. They will add a low or moderate flag to your record and you will be removed from the list.
For more information on what to do if you think you should be subject to shielding measures, or if you have received a letter from the NHS telling you to take shielding measures and you don’t think you need to do this, please see our Shielded Patient List webpages.
For more information about Shielding read the Guidance published by Public Health England on Shielding. For general advice on coronavirus please visit the NHS website.
Read more details here about the timings for information flows between patients page.
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 includes the Cabinet Office who are responsible for providing the Extremely Vulnerable Persons Service. More information about how the Cabinet Office uses personal data for that Service, who it shares information with and how long it will keep the information 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 patients list.
How long we keep your personal data for
We will retain your personal data for as long as is necessary for the purposes outlined above in accordance with the Records Management Code of Practice for Health and Social Care 2016 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.
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.