DATA-CAN, the UK’s Health Data Research Hub for Cancer in partnership with LIDA
DATA-CAN is incredibly proud of its partnership with the Leeds Institute for Data Analytics (LIDA) – a relationship which has grown and developed since Health Data Research UK launched the eight initial data hubs in 2019.
As the UK’s health data research hub for cancer, our aim is to make high quality health data more accessible for cancer researchers and health professionals, to help improve cancer services and patient outcomes. LIDA was one of DATA-CAN’s founding partners and has been at the forefront of DATA-CAN’s work over the last year. This article details some of the ways that we have worked in partnership with researchers at LIDA.
Improving access to real-time NHS data
At the height of the COVID-19 emergency, DATA-CAN worked with LIDA and the UCL Institute of Health Informatics to collect and analyse real-time data from UK cancer centres to look at the impact of the pandemic on cancer services and patients. This work had far-reaching impacts across the UK and Europe and demonstrated the immense power of gathering and analysing real-time data, enabling health services and policy makers to respond to changing situations rapidly.
Since then, our work with real-time data has continued through a pilot project creating a dynamic dashboard using weekly cancer service data from NHS organisations in the West Yorkshire area. The dashboard allows the NHS to see unwarranted variation in the provision of cancer care due to COVID or other short-term changes. It enables providers to address specific issues and deliver better patient outcomes.
Providing access to national cancer data through a Trusted Research Environment
Our involvement in the national Trusted Research Environment (TRE), led by NHS Digital, is a crucial part of DATA-CAN’s future. The TRE is opening up access to de-identified cancer data from across the whole of the United Kingdom to approved researchers from trusted organisations. The University of Leeds and Leeds NHS Teaching Hospitals Trust, are leading on this work which will enable important research on rates of cancer referrals, diagnoses and treatment.
The Trusted Research Environment is being developed in two phases. In the first phase, cancer data from the nationally collected NHS Hospital Episode Statistics (HES) and COVID-19 testing is being made available to approved researchers. Phase 2 will see national cancer datasets on outcomes, services, chemotherapy and radiotherapy being made available.
More information on the cancer data available on the NHS Digital TRE is available on the Health Data Research Innovation Gateway.
Using data to improve treatment options for early triple negative breast cancer
During that last year, we have worked with the Leeds and Edinburgh NHS Cancer Centres to collect and curate historic data from patients with early stage triple negative breast cancer to help support better drug development and treatments for patients with this deadly disease. The curated data and insights were shared with a pharmaceutical company that funded the research and are also available to NHS clinicians and academic researchers via the Innovation Gateway.
DATA-CAN’s aim over the next 12 months is to build a sustainable future for the hub, working with partners both in cancer, and other disease areas, to improve treatments and health outcomes for all patients. Patient and public involvement will remain embedded and core to all of our future plans. We will continue to develop the national Trusted Research Environment to improve access to national cancer data and we will work with local NHS organisations to improve NHS data in electronic health records so it can be utilised for vital cancer research.
We know that data saves lives and, working with LIDA, we look forward to continuing to play our part in unlocking the power of health data to improve cancer care.
Monica Jones, Chief Data Officer HDRUK Hub for Cancer