A recent webinar by Health Data Research UK (HDRUK) explored the importance of engaging with data research hubs, and the benefits of accessing such valuable information.
Speakers from Discover-NOW, DATA-CAN and INSIGHT shared the ways in which they are using accumulated data, and what they hope to achieve with it.
Discover-NOW currently have over 80 projects underway across a range of client and disease areas and hope to bring together health and care commissioners and providers, industry partners and academia in a “complex ecosystem.” They have access to the largest linked real world longitudinal data set in Europe, which they claim can be used to test innovations and treatments.
One case study they offered as an example was research they had conducted into Type 2 Diabetes. The study’s objectives were to provide consistently high quality, accessible and cost-effective care at scale, to improve clinician access to relevant patient information, without increasing data burden, and to increase patient engagement and involvement in their own health. Their work combined longitudinal data with direct care data in a digital service to improve care for patients with diabetes.
Speakers DATA-CAN followed up with their own research and explained that their aim was to use data to “improve care and outcomes for people with cancer” by making high quality data “more accessible for cancer researchers and health professionals.” They stated that they are working with both patients and the public to ensure that data is being used in a transparent and responsible way that will benefit “the NHS, patients and society.”
They hope to make it easier for cancer researchers to find cancer data by publishing metadata on the HDRUK gateway. Researchers will be able to search for various cancer terms and receive all the metadata available for that subject. They are hoping to take data from places where it is not accessible (for example, behind firewalls) and put it straight into researchers’ hands. They have received funding from Janssen and Roche to reinforce and expand their real-time data network.
Concluding the session, INSIGHT described their own application of data to drive forward innovation. The hub, which was formed in 2019, focuses on eye disease and hopes to use data to prevent people from going blind. Statistics from outpatient figures indicated that ophthalmology had surpassed orthopaedics as having the highest annual attendance.
INSIGHT are hoping to reinvent eye exams for the 21st century through use of big data and AI technology; researchers now have the capability to develop tools and share them rapidly. One example they gave was a collection of 8.75 million images accumulated as part of a dataset on diabetic retinopathy that can help with identification of the illness in patients. INSIGHT have said they intend to upload around 30 datasets in the coming months.
Other projects currently underway at HDRUK include a study into how blood tests can reveal causes and indication of a susceptibility to Covid, and a national multi-omics consortium to inform disease aetiology and prediction.
