Blog24th September 2020
As people and institutions come together on World Cancer Research Day to shine a light on the vital importance of cancer research, DATA-CAN’s clinical lead, Prof Kathy Pritchard-Jones, blogs about our important work to make it faster and easier for researchers to access and interpret cancer data securely.
The UK is a global leader in cancer research. Almost 100,000 patients were recruited to cancer clinical trials (both academic and commercial) last year [1] and an average of 201 commercial cancer trials have started each and every year since 2012 – the fifth highest the world [2]. But cancer research isn’t just about testing new drugs and medical devices, important population research is also exploring the causes of cancer, patient outcomes and other trends in cancer care.
Data is one of the most important and vital aspects of any research study and cancer research is no exception. However, despite the UK having one of the richest health data ecosystems, and one of the best cancer registries in the world, it is not always easy for researchers to access and analyse relevant health data in a timely manner. Datasets can be hard to find, incomplete and sometimes of poor quality. They are often held in separate databases, and difficult to access due to lack of clarity about information governance, costs and restrictions to use [3].
DATA-CAN is working to improve this. Our mission is to unlock the power of data to improve patient care. We want to make it faster and easier for researchers to bring together and interpret health data from across the NHS securely.
One important way that we are doing this is through the Health Data Research Innovation Gateway. The Gateway is a secure online portal enabling researchers to discover and request access to anonymised datasets on a wide range of conditions and patients. It is a bit like a national catalogue of what datasets are available.
The Gateway includes information about datasets from my own specialism of childhood cancer. The dataset describes anonymised data on 670 children with kidney tumours, representing more than 90 per cent of all cases in the UK and Republic of Ireland diagnosed in the last eight years. The aim of making this dataset more visible, as well as its linkage possibilities to routine health care data, is to help other researchers in their work on outcomes and provision of new treatments for children with this type of cancer.
As well as providing researchers with access to datasets, DATA-CAN is also leading our own research. During the Covid-19 emergency, we worked with UCL’s Institute of Health Informatics to collect near real-time data from major cancer centres and hospitals in the UK to analyse the effect of the pandemic on cancer services and patients as it was happening. The modelling highlighted that there were significant decreases in urgent referrals for suspected cancers and reduced numbers of patients receiving treatment for cancer, which could potentially lead to thousands of additional deaths from cancer over the coming year. We are continuing our research on near real-time data to help health services respond to the impact of Covid-19 on cancer patients.
Patients are at the heart of DATA-CAN’s work to improve researchers’ access to data. When using the healthcare system, patients can of course decide how and where their health data is used and accessed including in research. We are working with patient representatives and charities to better understand what really matters to cancer patients. DATA-CAN’s active patient and public involvement and engagement group is heavily involved in all of our work and brings a wealth of expertise and knowledge to the team.
As DATA-CAN moves forward into its second year, we hope to continue to support cancer researchers, in their efforts to improve patient care and services, by providing timely and secure access to high quality data.
Prof Kathy Pritchard-Jones is DATA-CAN’s clinical lead for London and for cancer in children and young people. She is one of the UK’s foremost experts in childhood cancer, professor of paediatric oncology at the UCL Institute of Child Health and honorary consultant oncologist at Great Ormond Street Hospital for Children NHS Foundation Trust.
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