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.

• From: Public Health England
• Published: 16 September 2016
• Last updated: 31 August 2021 — See all updates

This publication was withdrawn on 14 February 2022

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.

Documents

[Withdrawn] Independent Advisory Panel on Data Release

HTML

[Withdrawn] Accessing PHE data through the Office for Data Release

HTML

[Withdrawn] A guide to NCRAS data and its availability

https://www.gov.uk/guidance/national-cancer-registration-and-analysis-service-ncras#guides-to-cancer-data-and-working-with-us

[Withdrawn] Arrangements for access to national disease registration data held by PHE

Ref: PHE publications gateway number 2016299

HTML

[Withdrawn] Cancer registration data dictionary

MS Excel Spreadsheet, 1.01 MB

This file may not be suitable for users of assistive technology.

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If you use assistive technology (such as a screen reader) and need a version of this document in a more accessible format, please email publications@phe.gov.uk. Please tell us what format you need. It will help us if you say what assistive technology you use.

[Withdrawn] Rapid cancer registration data dictionary

MS Excel Spreadsheet, 654 KB

This file may not be suitable for users of assistive technology.

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[Withdrawn] A guide to completing the NCRAS data dictionary

Ref: GW-1753

PDF, 1 MB, 11 pages

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[Withdrawn] Current analytical partnerships involving NCRAS

Ref: PHE publications gateway number: GW-277

PDF, 890 KB, 23 pages

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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. 31 August 2021

   Added Notice of a temporary pause to the ODR approval service.

2. 19 May 2021

   Replaced NCRAS Rapid Cancer Registration data dictionary.

3. 7 April 2021

   Uploaded latest version of NCRAS Rapid Cancer Registration data dictionary.

4. 30 March 2021

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

5. 30 March 2021

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

6. 26 March 2021

   Updated cancer registration data dictionary.

7. 23 February 2021

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

8. 12 February 2021

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

9. 8 February 2021

   Updated: Cancer registration data dictionary.

10. 30 November 2020

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

11. 19 November 2020

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

12. 5 November 2020

    Updated IAPDR meeting date.

13. 30 October 2020

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

14. 20 May 2020

    Updated training opportunities dates.

15. 30 April 2020

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

16. 5 November 2019

    Added link to IAPDR terms of reference.

17. 1 August 2019

    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. 5 July 2019

    Replaced cancer data dictionary with version 3.8.

19. 1 July 2019

    Updated next webinar training date.

20. 22 March 2019

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

21. 13 February 2019

    Updated next webinar training date.

22. 4 January 2019

    Updated information on forthcoming webinar in January 2019.

23. 13 December 2018

    Replaced cancer data dictionary with version 3.7.

24. 28 August 2018

    Replaced cancer data dictionary with version 3.6.

25. 1 August 2018

    Replaced cancer data dictionary with version 3.5.

26. 20 July 2018

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

27. 12 July 2018

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

28. 5 July 2018

    Replaced ODR cancer data dictionary with version 3.4.

29. 15 May 2018

    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. 3 May 2018

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

31. 19 April 2018

    Updated next webinar date details.

32. 15 February 2018

    Updated cancer registration data dictionary v3.2.

33. 11 January 2018

    Added date for the next ODR introductory webinar.

34. 13 November 2017

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

35. 13 September 2017

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

36. 28 June 2017

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

37. 21 February 2017

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

38. 16 September 2016

    First published.