One in two people will get cancer during their lifetime. Every year, almost 400,000 new cases are diagnosed in the UK. Cancer costs the NHS £7bn annually.
Research is vital to create new medicines and treatments, support quicker diagnoses and potentially save lives. The UK has one of the richest health data ecosystems in the world, however it is not always easy for researchers to access, analyse and draw conclusions from this appropriately. The data can be hard to find, incomplete and of variable quality. It is often held in separate databases, and difficult to access due to lack of clarity about information governance, costs and restrictions to use.
What we did
DATA-CAN was set up to make it faster and easier for researchers to bring together, improve the quality of and interpret health data securely, enabling research that develops better cancer care, gives patients faster access to clinical trials and creates new investment in UK healthcare.
DATA-CAN has created a unique partnership of NHS organisations, patients, charities, academia and industry working across all four nations of the UK. Alongside UCLPartners, the other founding partners of DATA-CAN comprise Leeds Teaching Hospitals NHS Trust, Queen’s University Belfast, Genomics England, University of Leeds and IQVIA.
DATA-CAN was set up to remove many of the existing barriers faced by researchers trying to access cancer data in the UK.
We want to enable researchers to get access to high-quality cancer data so they can learn from every case of cancer, helping ensure that patients receive the best cancer care and making it easier for patients to get access to clinical trials and the latest treatments.
We developed our approach to ensure that patients are influential at all levels of DATA-CAN – for example, voting on the steering committee and advisory boards, supporting management decision making, and reviewing our plansDr Charlie Davie, Director for DATA-CAN
Since its launch DATA-CAN has:
- Helped to increase the visibility and accessibility of cancer data across the UK by working with the NHS, research institutes and charities to upload nine datasets that are discoverable through the Heath Data Research UK Innovation Gateway. This will facilitate the use of data by clinicians, researchers, charities and industry.
- Supported the development of real-time data for clinical trial matching by facilitating UK hospitals to join the Oncology Data Network (ODN), IQVIA’s data sharing network of European cancer treatment centres. Since DATA-CAN’s launch in late 2019 four NHS hospitals have signed up to ODN.
- Garnered front-page media reporting for research into the impact of the COVID-19 pandemic on cancer patient treatment and outcomes. This was collaborative work between UCL Institute of Health Informatics and DATA-CAN, modelling the impact on cancer patients of the disruption of cancer pathways due to the pandemic. 6,000-17,000 excess deaths in a year in people with cancer were estimated.The research attracted the attention of national and international media, highlighted the issue to government and gave indicators for what should be considered when planning for cancer services after the pandemic.
- Supported COVID-19 collaborative research by contributing to the DeCovid study as a second wave digitally mature organisation (via Leeds Teaching Hospital NHS Trust & Leeds University), behind the first wave creators of the project UCLH, King’s College London and University Hospitals Birmingham. DATA-CAN provided input on the collection of a comprehensive dataset and of a subset of data that is cancer focused.
I want my data to be used– as a citizen I expect it to be used – but I also want to be cared for, for my data to be protected and kept safe and to have a say in how my data is used. These are all processes that DATA-CAN will help ensure are in place.
This is a unique partnership that considers the transparency and security of my data, the quality of researchers who access my data, the quality of research, the type of research – everything about me, because my data is me, not just a unique numberMargaret Grayson, patient representative on DATA-CAN steering group