Covid-19 data access requests

Discover-NOW Hub is supporting Covid-19 research requests to support the national effort and focus on improving our understanding of this disease and the impact on our communities and healthcare sector. A key element is ensuring that requests to access NWL’s De-identified Covid-19 linked data set can be reviewed in a timely manner and with the appropriate rigour and governance. The COVID-19 NWL Data Prioritisation Group has been established as a temporary solution to support this ambition. This governed group will meet weekly to review both operational and research requests to access the De-identified data for Covid-19 related issues.

Discover-NOW, the Health Data Research Hub for Real World Evidence, aims to revolutionise the way health data is used responsibly for research into treating and preventing disease.

Led by Imperial College Health Partners, brings together NHS organisations, globally recognised academic, industry, technology, research and charity partners as well as patients and the public focussed on the use of real-world health data for research.

Launched in November 2019 Discover-NOW is 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.

Discover-NOW is pioneering the use of real-world evidence (RWE) in health research. 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.

What

Discover-NOW 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 9 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. 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 more than 6,000 people.

How

This combination of real-world data access, Trusted Research Environment, tools, technologies and expertise 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.

Discover-NOW is underpinned and governed by robust information governance arrangements. The Discover-NOW team supports the navigation of data access requests as they are processed by the North West London data controllers and reviewed and authorised by the NWL Data Access Committee.

Public trust is paramount

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.

Initial focus

The work of Discover-NOW is initially focussed on how real-world evidence can improve understanding of many long-term conditions. This initial research is in partnership with AstraZeneca, one of the Hub’s largest contributors, and is focussing on finding new solutions through real-world evidence to help people to manage their Type 2 Diabetes (T2D). Discover-NOW aims to improve the delivery of T2D care by identifying T2D patients most at risk of complications, facilitating proactive interventions, enabling the development of tailored digital health solutions and allowing for real-time management solutions.

Through the safe and secure curation of patient information Discover-NOW will create a step change in the way health information is accessed and analysed to accelerate the development of new treatments, devices and applications that support better management and prevention of a range of conditions. This work will 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 – the Health Data Research Hub for Real World Evidence

As a London citizen I am hugely excited about this initiative and the benefits it will bring to patients and the public. Through bringing information that already exists about us as patients together and enabling researchers and scientists to access this in new and secure ways, the Discover-NOW Hub could be the key to unlocking new life saving treatments or even preventing killer diseases altogether. Data really can save lives

John Norton
Citizen Partner of Discover-NOW – the Health Data Research Hub for Real World Evidence

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For more information

For all research opportunities and business development enquiries:
Dusan Saska, Business Development Lead
Dusan.saska@imperialcollegehealthpartners.com

For communications enquires:
Katie Harrison, Communications Lead
Katie.harrison@imperialcollegehealthpartners.com