DATA-CAN’s data services are guided by a respect for data privacy and a commitment to empowering cancer research across the UK.
Cancer is a high priority for researchers and practitioners with a demand for rich, national-scale data that covers the whole patient pathway. DATA-CAN is improving the quality and access to this kind of data through the following mechanisms:
NHS Trusted Research Environment
Trusted Research Environments (TREs) are secure spaces where authorised researchers can access the data they need for approved projects. The de-identified data is analysed without being downloaded, to provide safe and secure data for research.
DATA-CAN is working in partnership with NHS Digital to provide approved researchers from trusted organisations with timely and secure access to de-identified cancer data through the NHS Trusted Research Environment. Access to the NHS TRE is to help researchers understand the impact of COVID-19 on the referral, diagnosis, treatment and outcomes of patients with cancer, and those who may become unwell in the future.
The ambition is to look at how this information can help develop new services, tests and treatments and ultimately save lives.to help understand the impact of COVID-19 on people affected by cancer.
Curated Electronic Health Record Network
DATA-CAN has unique access to curate patient-level data at source within the electronic health records (EHR) of several large NHS cancer centres across the UK. The data is checked and completed within the clinical record, and then extracted and combined to create bespoke datasets according to the requirements of project sponsors. The resultant datasets are analysed to generate real-world evidence, typically relating to patient characteristics, treatment regimens and outcomes. Only de-identified results are made available to project sponsors.
Practising oncologists provide expert input at all stages of the studies, from scoping and protocol design to final reporting. In addition, all commercially-funded projects are subject to approval by members of the DATA-CAN PPIE Group.
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Making datasets discoverable via the Innovation Gateway
To create the best quality datasets for use in health research, DATA-CAN works with a network of experienced data custodians across the UK. Working together, we are publishing discoverable datasets through the Health Data Research Innovation Gateway. The datasets are categorised under four headings:
- Tumour type (eg colorectal, lung, breast and prostate cancer)
- Population group (eg children and young people)
- Whole patient pathway (eg Comprehensive Patient Records dataset of linked primary, secondary and tertiary care data from referral to diagnosis to treatment)
- Novel data sources (eg molecular/genetic data from Genomics England).