Guidance

[Withdrawn] Arrangements for access to national disease registration data held by PHE

Updated 31 August 2021

This guidance was withdrawn on

On 1 October, Public Health England (PHE) was disestablished and its functions shared across a number of ‘receivers’ organisations. During this period of transition, the Office for Data Release (ODR) paused its usual approval process to focus on the handover of data resources and applications to the receivers.

UKHSA continues to work with all receivers to support access to data previously available through PHE.

Read the update on arrangements for how data will be made available from NHS Digital.

Read how to apply for access to protected data from UKHSA.

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This publication is available at https://www.gov.uk/government/publications/accessing-public-health-england-data/arrangements-for-access-to-national-disease-registration-data-held-by-phe

Public Health England (PHE) collects a wide variety of data on patients in England for National Disease Registration purposes.

PHE can make this data available to bona fide individuals and organisations who wish to use it for acceptable health and care purposes, providing patient confidentiality is not compromised and appropriate research ethics approvals have been granted where required.

PHE currently supports such data access in 2 ways:

  1. Formal requests for release of data can be made to the PHE Office for Data Release (ODR) using the data request form.

    The list of all ODR data releases is published regularly.

  2. Organisations wishing to work on projects that align with PHE’s overall objectives to improve and protect the nation’s health can apply to fund or sponsor staff to work on our data in PHE space. Such work would normally be expected to deliver benefits that exceed those that might be achieved by either partner working separately. In these arrangements the employment may be either through PHE or the partner organisation; in the latter case an honorary PHE contract will be offered if required. PHE will normally recover costs of supervision and other overheads. Arrangements for ownership of any new Intellectual Property created through the arrangement will be agreed in advance.

You can read a summary of the current analytical partnerships involving the National Cancer Registration and Analysis Service.

We welcome approaches from organisations who wish to propose similar arrangements.

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