Guest Blog | All data matters and all matters data – how Health Data Research hubs are unlocking the power of data
Guest blog from DATA-CAN: The Health Data Research Hub for Cancer
In September this year, the seven initial Health Data Research Hubs celebrated their joint first birthday and reflected on their achievements over the past year. Set up as part of a four-year, £37 million investment from the UK Government Industrial Strategy Challenge Fund, the data hubs were designed to create a UK-wide system for the safe and responsible use of health-related data on a large scale.
Led by Health Data Research UK, the hubs are aiming to improve the lives of people with debilitating effects from long term health conditions by linking up different types of health data and making it more easily accessible and user-friendly for research. They are doing this while maintaining strict controls around data privacy and consent.
Individually and together, the hubs are working to support earlier diagnosis, the discovery of new treatments and more efficient health management systems – all of which have the potential to transform patients’ lives and improve their health outcomes. The hubs are all making high-quality datasets available via an online portal – the Health Data Research Innovation Gateway.
Three of the data hubs – DATA-CAN, Discover-NOW and INSIGHT – are working with MedCity to deliver a short series of virtual seminars. These are designed to showcase how health data is helping research and explore how the life sciences industry, including small and medium enterprises, can work with the hubs.
Each of these three hubs brings expertise in different areas including cancer, real-world evidence, eye disease, advanced analytics and artificial intelligence.
DATA-CAN is the only data hub that is solely focussed on cancer. It is making high-quality health data more accessible for cancer researchers and clinicians. This will help them carry out research into new diagnostic tools and treatments to improve care and outcomes for people with cancer. During COVID-19, DATA-CAN has been supporting the collection of real-time cancer data from the NHS to help health services identify issues rapidly and respond. This real-time data, collected from cancer centres during the first lockdown, revealed a decline in urgent referrals for cancer and in chemotherapy attendances during March–May. The findings were presented to the UK’s four chief medical officers and SAGE, contributing to the decision to restart cancer services.
Discover-NOW is the Health Data Research Hub for Real World Evidence (RWE) and led by Imperial College Health Partners. It supports access to one of the largest depersonalised linked health data sets in Europe which brings together real-world patient health data, in a safe, secure and Trusted Research Environment (TRE). Initially this is across a population of more than 2.3 million in North West London, then scaling to nearly nine million across London and beyond over time. The Hub also offers leading regulation ready and GDPR compliant tools, technologies and expertise to support RWE health research and improvements. This combination means Discover-NOW creates unrivalled opportunity and potential in how real-world evidence can be used to transform health and care for patients. It offers clinicians, researchers and scientists, supported by the people of North West London, the ability to accelerate the development of new treatments, devices and apps to more effectively manage, and even prevent health conditions
INSIGHT is the eye health hub led by University Hospitals Birmingham and Moorfields Eye Hospital NHS Foundation Trusts. The hub provides large-scale, high quality data for advanced analytics and the development of artificial intelligence. It will allow researchers to develop new insights into eye disease and wider health conditions, including dementia and diabetes. Across the NHS as a whole, 25 million eye images are created every year, representing an unrivalled resource for machine learning. INSIGHT aims to make this type of routine eye data more accessible for research, transforming the way diseases are diagnosed, treated and managed, and ultimately saving lives.
The hubs are really looking forward to joining with MedCity for their first virtual seminar on 3 February. They will be demonstrating how they can work with the life sciences sector to unlock the power of health data to support research and improve patient outcomes. To register, please visit Eventbrite.