Discover-NOW, Health Data Research Hub for Real World Evidence, have today successfully passed its second milestone recognising its significant impact on health data research in the UK.
Through supporting access to one of the largest depersonalised linked health data sets in Europe within a Trusted Research Environment (TRE) led by Imperial College Health Partners, in collaboration with NHS organisations, academic, industry, technology, research and charity partners as well as patients and the public, it is revolutionising the way health data is used for research into treating and preventing disease.
This second milestone marks the halfway point of the three-year funding period, through the UK Research and Innovation Industrial Strategy Challenge Fund and delivered through Health Data Research UK– the national institute for health data science.
Measured on improving datasets so that more researchers can find and utilise data to answer research questions and ensuring work is underpinned through meaningful patient and public involvement and engagement (PPIE), Discover-NOW was rated highly in all aspects.
“I’m incredibly proud of our achievements over the last 18 months in a time when health data has never been further up the global, national and local agenda for treating and preventing diseases. Passing this milestone demonstrates the growing and lasting impacts of Discover-NOW which has the potential to benefit millions of people into the future and contribute significantly to the health and wellbeing of our population.”
Dr Axel Heitmueller, Managing Director of Imperial College Health Partners and Director of the Discover-NOW
Significant impact in the UK response to the pandemic.
Discover-NOW over the last 18 months has demonstrated how it pivoted data improvement efforts to provide more opportunities for all sectors to utilise the power of data in their fight to understand, mitigate and overcome COVID-19. From informing performance benchmarks for Trusts in order to improve patient care during the pandemic, to repurposing established work with Hub partner, AstraZeneca, to enable remote monitoring and near-patient testing to be used to support NWL COVID ‘Hot Hubs’.
“The Hub’s role as a facilitator between the NHS, academia and industry partners to provide a level playing field and a safe environment to experiment is critical to the success of innovative and transformational work.”
Ross Stone, Global Programme Director, Healthcare, AstraZeneca
The PPIE team have been instrumental in identifying and bringing together public voices.
Discover-NOW supported one of the most progressive large-scale public deliberations in the UK on the use of health and care data and using these recommendations have formed their own Citizen Advisory Group as part of their commitment to engaging patients and the public in a meaningful and authentic way to ensure trusted use of data.
The nationally endorsed approach of bringing together 40 citizens, reflective of the North West London population, to deliberate how they expect their data to be accessed as part of health research has culminated in a set of clear recommendations that are now informing Hub policy including strong support for an independent data access group to review all research requests against a robust set of control criteria.
It has been truly impressive to witness such a broad range of views from such a diverse group, really getting under the skin and grappling with these complex issues. It demonstrates the power and effectiveness of informed conversation to explore people’s expectations and to involve them in genuine decision-making.”
John Norton, Citizen partner of Discover-NOW
Full details of the work the Hubs have achieved so far is available via HDR UK’s report: Improving Health Data: Impacts from Health Data Research Hubs or watch in this video below: