Launched in November 2019 Discover-NOW was one of seven Health Data Research Hubs funded through the UK Research and Innovation Industrial Strategy Challenge Fund and delivered through Health Data Research UK– the national institute for health data science.
Still an active member of the HDR UK Hub Alliance, Discover-NOW is now scaling into a London-wide Secure Data Environment thanks to £3.6 million grant funding from the Data for Research and Development programme, a joint initiative between NHS England, the Department for Health and Social Care and the Department of Business, Energy and Industrial Strategy (BEIS).
As the London SDE, Discover-NOW is one of the sub-national secure data environments (SNSDEs), a network of SDEs developed by NHS England to support nationwide research into diseases and conditions affecting the population, to enable the development of new treatments and the analysis of how health and care is delivered to improve patient experiences and outcomes.
Once the London-wide data is linked, Discover-NOW will be able to provide approved academic and commercial users access to anonymised data for London’s whole population of 10.8 million people. This will create one of the largest data assets in the world and offer unparalleled opportunities for discovery science to improve patient care.
Since its inception, Discover-NOW has pioneered the use of real-world evidence (RWE) in health research, making it the ideal foundation from which to develop a London-wide secure data environment for research and development. To date, we have supported the approval of almost 300 data access requests, and research informed by Discover data has translated into 17 academic publications.
Establishing Discover-NOW as the London SDE is a collaborative endeavour between Imperial College Health Partners, the London Data Service, the London Health Data Strategy, ONELondon, UCLPartners and the Health Innovation Network.
Traditionally data in research is collected in highly controlled environments such as clinical trials. RWE research is based instead on health data that is collected in real world settings such as routine appointments and from mobile devices. This data gives a richer insight through allowing researchers to better design and conduct studies about potential treatments and the impact they could have on the health of the population.
Discover-NOW supports access to one of the largest deidentified linked health data sets in Europe which brings together real-world patient health data, in a safe, Secure Data Environment (SDE).
We also offer leading regulation ready and GDPR compliant tools, technologies and expertise to support RWE health research and improvements. These include a high-performance analytics environment, methods including machine learning, a feasibility and research recruitment tool, as well as a consent to contact register of almost 80,000 people.
Discover-NOW will only realise our ambition and the potential benefit to millions of people if we have the support, confidence and trust of our communities. We are committed to engaging patients and the public in a meaningful way. We are therefore proud to have partnered with OneLondon Local Health and Care Record Exemplar (LHCRE) programme which recently carried out one of the UK’s most progressive large-scale public deliberation events on the use of health and care data. Discover-NOW is committed to ensuring that all our current and future ways of working reflect and embed the recommendations made by the public through this deliberation. The trusted governance and established infrastructure and service offer of Discover-NOW, will be reviewed and scaled as new data feeds become available.