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Shielded Patient List - Cancer and Rare Diseases Data

Data Provision Notice to provide NHS Digital with cancer and rare diseases data from Public Health England. This is to improve the identification of patients who may be clinically extremely vulnerable if they contract COVID-19, and determine whether those patients should be added to the Shielded Patient List.
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Overview

The objective of this collection, which requires the submission of cancer and rare diseases data from Public Health England (PHE), is to improve the identification of patients who may be clinically extremely vulnerable if they contract COVID-19, by using more accurate clinical data sets linked with the existing data. It will allow NHS Digital to assess whether additional patients should be added to the Shielded Patient List.

Update: 23 November 2020: The Data Provision Notice has been revised to clarify that data about deceased patients is not included.

Scope of the collection

This Notice is served on:

  • Public Health England

in respect of the following data:

  • Cancer Registry
  • Radiotherapy
  • Systemic Anti-Cancer Therapy
  • Proxy Cancer Registrations
  • Rare Diseases
  • Congenital Anomalies.

Legal basis for provision of data

NHS Digital has been directed by the Secretary of State under section 254 of the Act to establish and operate a system for the collection and analysis of the information specified for this service. 

ARTICLE

COVID-19 Public Health Directions 2020

A Direction given by the Secretary of State for Health and Social Care requiring NHS Digital to establish and operate information systems to collect and analyse data in connection with COVID-19, and develop and operate information and communication systems to deliver services in connection with COVID-19.

Period of the collection

The period for the collections will be:

Data Set Period
Cancer Registry Historic data (Fixed Annual snapshot) – One-off plus occasional ad-hoc transfer if patient opt-outs need to be applied Prospective data - monthly until further notice
Radiotherapy Historic data (Fixed Annual snapshot) – One-off plus occasional ad-hoc transfer if patient opt-outs need to be applied Prospective data - monthly until further notice
Systemic Anti-Cancer Therapy Historic data (Fixed Annual snapshot) – One-off plus occasional ad-hoc transfer if patient opt-outs need to be applied Prospective data - monthly until further notice
Proxy Cancer Registrations Prospective data – monthly until further notice
Rare Diseases One-off collection
Congenital Anomalies One-off collection

Read the Data Provision Notice

Shielded Patient List - Cancer and Rare Diseases Data Provision Notice (Version 1.1)

pdf 1 MB

Last edited: 23 November 2020 6:10 pm