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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. As a responsible public body, and member of the Information Fair Trading Scheme, PHE is pleased to make its data available to bone 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, other options such as a secure safe haven space and a cancer data model containing synthetic or perturbed data are planned over the next year.
- Formal requests for release of data can be made to the PHE Office for Data Release (ODR) using the data request form. All applications for potentially identifiable data require the approval of PHE’s Caldicott Guardian before release and will therefore need to comply with the Caldicott principles.
- 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. The contractual framework is managed through the PHE Opportunities Assessment Group.
A list of data releases is published regularly.
We welcome approaches from organisations not on the below list who wish to propose similar arrangements.
The following organisations have an agreement with PHE which includes access to data within PHE space:
- NHS England
- Cancer Research UK
- Macmillan Cancer Support
- Teenage Cancer Trust
- Association of British Pharmaceutical Industry (ABPI)
- London Cancer Alliance
- Health Data Insight CiC
- Royal College of Physicians
- Royal College of Surgeons
- Transforming Cancer Services London
- various PhD students from academic partners