Improving access to cancer data in the UK
Using routinely collected data for research
In the UK, collection of NHS cancer data is managed individually by each of the devolved nations. In Scotland, data is collected by the Information Service Division (ISD), the Welsh Cancer Intelligence and Surveillance Unit (WCISU) manages collection across Wales and in Northern Ireland, it is the responsibility of the Northern Irish Cancer Registry (NICR).
In England, cancer registration is managed by the Public Health England National Cancer Registration and Analysis Service (NCRAS). Every year, NCRAS registers over 300,000 cases of cancer to support cancer epidemiology, public health, service monitoring and research.
Data includes information about the patient (their NHS number, name, address and date of birth), detailed tumour level information from pathology reports and MDTs, and treatment information along their care pathway.
By obtaining data from multiple sources and then matching and merging them as required, NCRAS can build a complete picture of the incidence and prevalence of cancer in England, as well as understanding how cancer patients are diagnosed, treated and their outcomes.
The NCRI and PHE Partnership
The richness and scale of these population based cancer registries provide a globally relevant resource for cancer research. Unlocking their full potential depends on greater engagement and secure data access amongst the cancer research community. To bring this forward, the NCRI and PHE have come together and created two new roles with the aim to:
- Improve awareness of and engagement with the secondary use of routinely collected data across the UK
- Provide guidance and support to allow efficient and informed access to centrally held cancer data
For advice on where to go for cancer data
The UK health data landscape is fairly complicated. There are various data providers, cross border differences and regular organisational changes. The Health Data Finder for Research and associated Metadata Catalogue have been developed to support researchers to navigate the types of data available and the relevant organisations to contact.
To receive bespoke advice and support, please contact the Cancer Liaison Manager.
For advice on gaining access to cancer data
The Office for Data Release (ODR) provides a service supporting researchers applying for data held in PHE, in a transparent, fair and lawful manner. The aim of the partnership is to work within this team and help streamline the information governance and other processes that enable this. It also aims to consider the purpose of any future project and tailor the application to fulfil the needs of the applicant.
To initiate a data request and receive this tailored pre-application advice; please contact the ODR at firstname.lastname@example.org, where the Data Access Officer (Dominic Dwyer) can discuss the application in more detail.
Get regular updates and information
For regular updates and information on PHE data and making a data access request, please sign up to the ODR’s mailing list.