The Cancer Data Collaborative: improving the use of data for cancer research and care
The Cancer Data Collaborative is a new forum which brings NHS England together with academia, third sector, research organisations and people affected by cancer. The aims are to improve access, quality and timeliness of cancer data for all users.
What is the purpose of the Collaborative?
Access to high quality data is essential for cancer research and service evaluation, which helps save lives.
There have been great improvements in the collection of different datasets over the last decade. Unfortunately, researchers are finding it difficult to access the data they need or are waiting a long time to be given access to it. This limits the opportunity to prevent more cancers and improve patient outcomes.
The Collaborative will identify ways in which the wider community can support NHS England to make improvements in these areas. Maintaining public confidence in the use of their data is a fundamental principle of this work.
Who is a part of the Collaborative?
Member organisations represent a wide range of data user interests, including patient and public representatives.
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NHS England
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CRUK
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Macmillan
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Cancer 52
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Health Data Research UK (HDR UK)
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Association of Medical Research Charities (AMRC)
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use MY data
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Patient and public representation
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Researchers and academics who undertake data-driven cancer research
Areas of focus
The Collaborative meets every two months, chaired and organised by Cancer Research UK. Since the first meeting, in July 2024, the group have identified three broad areas of focus around which specific projects will be developed:
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Optimising Data Requests - through information sharing
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Unlocking Datasets - such as national cancer screening data
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Faster Access to Data – by addressing specific capacity gaps
Summaries of all agreed projects will be made available on this page.
Cancer Consolidated Data Set
The Cancer Consolidated Data Set integrates multiple cancer datasets, allowing researchers to build more streamlined datasets for their studies.
Accessible via the Data Access Request Service, this modular data product was developed by the National Disease Registration Service (NDRS). The Collaborative hosted a workshop to share key details about the dataset, including its modular design and data sources, such as Cancer Registration Data (2013-2021), Cancer Pathways Data, and Rapid Cancer Registration Datasets.
Watch the recording
Learn more about the Cancer Consolidated Data Set
Contact the NDRS
How can I keep up to date or contribute?
People affected by cancer
The Cancer Data Patient and Public Community is a group of people who use their lived experiences to shape data-driven research projects and developments about how data is used. Find out more about how you can have your say on how different types of data about people are used for research.
Researchers
Sign up to our newsletter for updates, or share your perspectives by joining our health systems data special interest group.
For any other queries about the Collaborative, email researchdata@cancer.org.uk