Discover-NOW - Imperial College Health Partners

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.

More information

Discover-NOW, a unique partnership led by Imperial College Health Partners (ICHP), will be the Health Data Research Hub for Real World Evidence in the UK. One of seven pioneering data hubs to be set up this October, it will enable cutting-edge research for health discoveries and will aim to give patients across the UK faster access to pioneering new treatments.

Discover-NOW will bring together NHS organisations, globally recognised academic, commercial and charity partners as well as patients and the public to revolutionise the way health information is used to treat and prevent disease in the future. We will scale our already leading data eco-system working in partnership with technology and academic partners such as Google, IBM, NorthWest EHealth, Imperial College London and Medopad.

Historically health research has predominantly used data to look retrospectively. Through safe and secure curation of patient information, Discover-NOW will provide leading clinicians, researchers and scientists with access to de-identified linked patient information at scale in near to real time. This will enable them to look prospectively to identify new patterns in disease thus helping us to better manage many conditions and, in some cases, prevent them happening in the first place.

Starting with Type 2 Diabetes, Discover-NOW will also use real world data to improve understanding of many long-term conditions. This initial work is in partnership with AstraZeneca, one of the hub’s largest contributors, and will focus on finding new solutions to help people struggling to manage their Type 2 Diabetes.

Discover-NOW has the potential to benefit millions of people, however, we will only realise these benefits if we have the support and trust of our communities and wider population. We are therefore proud to be supporting one of the most progressive public engagement programmes to build trust and confidence in how health information is used. It is only through working in partnership with our communities that we will understand their expectations with regards to how their information should be used, enabling us to design a Hub that operates in line with these thus building trust.

Health Data Research Hubs

On 12 September Health Data Research UK (HDRUK) introduced the elements of the UK-wide capability that will enable the safe and responsible use of health-related data at scale for research and innovation. This includes the UK Health Data Research Alliance, the Innovation Gateway, and a network of seven world-leading Health Data Research Hubs. These are part of the Digital Innovation Hub (DIH) Programme, a £37.5M investment funded by UK Research and Innovation’s Industrial Strategy Challenge Fund (ISCF).

The Hubs will focus on curated, disease focused datasets, clinical trials, and real-world evidence. They will involve patients and the public in shaping the research activities and will improve secure and responsible access to data through the UK Health Data Research Alliance and a common Innovation Gateway. This new gateway layer will act as a single access point to UK health research data for industry, researchers and innovators.

Benefits for patients and the public

Discover-NOW promises to revolutionise the way health information is used to treat and prevent disease in the future, creating a step change in the development of new cutting-edge treatments and interventions thus benefitting millions of people.

However, we will only realise this ambition if we have the support and trust of our communities and wider population.

Discover-NOW is therefore implementing one of the most progressive public engagement programmes to build public trust. We are committed to engaging patients and the public in a meaningful way throughout our work, and working with them in shared decision making.

It is only through working in partnership with our communities that we will understand their expectations with regards to how their information should be used, enabling us to design a Hub that operates in line with these thus building trust.

Benefits for data science

Discover-NOW will have access to one of Europe’s largest linked longitudinal data assets supported by consent to contact technology. Becoming a Hub will enable us to scale from circa 2mill to 10mill population and ensure the information can be accessed by researchers, scientists and innovators in near real time. This has never been achieved on this scale before and will genuinely revolutionise the way health information is used to transform health care in the future.

Trusted and appropriately governed access will support partners to develop new treatments and interventions that have the potential to dramatically improve patient outcomes and quality of life through:

Novel clinical trial methodologies that identify new patterns and associations of disease and how to treat these effectively;
The development of devices, apps and algorithms that can be tested in near real time through secure access to a de-identified data asset.

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:

“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.”

John Norton, Citizen Partner of 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”

For more information

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

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