Guidance

Accessing Public Health England data

Details of the services offered by the PHE Office for Data Release (ODR) and guidance on how to access PHE held data.

Documents

A guide to NCRAS data and its availability

Arrangements for access to national disease registration data held by PHE

Cancer registration data dictionary

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Rapid cancer registration data dictionary

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A guide to completing the NCRAS data dictionary

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Current analytical partnerships involving NCRAS

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Details

Public Health England (PHE) recognises the benefits of using data for the public good but also takes its responsibility for protecting confidentiality very seriously. We have a range of policies, protocols and processes in place to ensure the confidentiality of data is maintained at all times.

The Office for Data Release (ODR) is responsible for managing the release of explicitly identifiable or potentially identifiable data from PHE on behalf of the information asset owner to an agreed process and within a formal structure.

Notice of a temporary pause to the ODR approval service

PHE has provided data release functions since 2013 for a number of data resources. From 1 October, PHE will no longer exist and its data resources will transfer to other ‘receiver’ organisations. Data release functions will in future be the responsibility of those receiver organisations.

We are pausing the usual Office for Data Release (ODR) approval process from 1 September 2021 to focus on the handover of data applications to the new system.

We are already working closely with the successor organisations – NHS Digital, NHS England and NHS Improvement (NHSEI), Department of Health and Social Care (DHSC) and UK Health Security Agency (UKHSA) – towards a smooth transition, and have put in place a triage process to ensure that priority applications, particularly those related to the COVID-19 response, are managed swiftly. Any new applications received from 1 September will be logged, and all ‘in progress’ pre-applications and ‘applications paused’ will be addressed as soon as the transition process is complete.

The dissemination of data will continue where ODR approval has already been granted, with every effort made to fulfil these obligations before applications are transferred to receiver bodies on 1 October 2021:

  • applications to access cancer registration data from the National Cancer Registration and Analysis Service will be passed to NHS Digital
  • applications to access National Congenital Anomaly and Rare Disease Registration Service data will be passed to NHS Digital
  • applications to access Population Screening data will be passed to NHS England
  • applications to access syndromic surveillance and other health protection data (including COVID-19) will be passed to UKHSA
  • applications to access National Drug Treatment Monitoring System data will be passed to DHSC

We want to reassure all applicants (awaiting a decision or seeking advice) that over the coming weeks our focus will be on making sure that each receiver body has the information they need to support their current and future data applications, so that all ODR applicants can continue to build on the translational impact PHE data has had over the last 7 years.

We are working hard to ensure that future arrangements are robust and responsive and will be catching up with any paused applications as soon as possible.

Thank you for all your support and continuous cooperation.

Published 16 September 2016
Last updated 31 August 2021 + show all updates
  1. Added Notice of a temporary pause to the ODR approval service.

  2. Replaced NCRAS Rapid Cancer Registration data dictionary.

  3. Uploaded latest version of NCRAS Rapid Cancer Registration data dictionary.

  4. Added link to minutes of latest IAPDR meeting (14 December 2020).

  5. Added new meeting date to Independent Advisory Panel on Data Release guidance.

  6. Updated cancer registration data dictionary.

  7. Updated 'Meetings of IAPDR' date and 'IAPDR member profiles' document.

  8. Updated 'Office for Data Release', to reflect announcement of new Caldicott principle.

  9. Updated: Cancer registration data dictionary.

  10. Added guide to completing National Cancer Registration and Analysis Service (NCRAS) data dictionary.

  11. Updated NCRAS Cancer Registration Data Dictionary and added NCRAS Rapid Cancer Registration Data Dictionary.

  12. Updated IAPDR meeting date.

  13. The document 'PHE cancer data sets, linkage and availability' has been replaced with a link to our more comprehensive guides.

  14. Updated training opportunities dates.

  15. Replaced version 3.8 NCRAS Cancer Registration Data Dictionary with version 4.0.

  16. Added link to IAPDR terms of reference.

  17. Added 'Independent Advisory Panel on Data Release' and 'Independent Advisory Panel on Data Release – Member profiles'. Updated third paragraph of 'Accessing PHE data through the Office for Data Release'.

  18. Replaced cancer data dictionary with version 3.8.

  19. Updated next webinar training date.

  20. Added 'Current analytical partnerships involving NCRAS' and updated 'Arrangements for access to national disease registration data held by PHE'.

  21. Updated next webinar training date.

  22. Updated information on forthcoming webinar in January 2019.

  23. Replaced cancer data dictionary with version 3.7.

  24. Replaced cancer data dictionary with version 3.6.

  25. Replaced cancer data dictionary with version 3.5.

  26. Updated next webinar date details in 'Accessing PHE data through the Office for Data Release'.

  27. Updated 'Accessing PHE data through the Office for Data Release' guidance.

  28. Replaced ODR cancer data dictionary with version 3.4.

  29. Deleted an out of date paragraph and added a link to the Office for Data Release form in the Accessing PHE data through the Office for Data Release document.

  30. Removed the ODR request form (version 3) and associated guidance notes which are no longer valid.

  31. Updated next webinar date details.

  32. Updated cancer registration data dictionary v3.2.

  33. Added date for the next ODR introductory webinar.

  34. Added the 'Cancer registration data dictionary' and updated the guidance.

  35. Updated training opportunities in 'about the PHE ODR and accessing data'.

  36. Updated 'About the PHE ODR and accessing data' publication and added 'PHE cancer data sets, linkage and availability' document.

  37. Added details of the DRAB meeting minutes to About the PHE ODR and accessing data publication.

  38. First published.