Discover-NOW: The Health Data Research Hub for Real World Evidence

Lead Research Organisation: Imperial College Health Partners

Abstract

Information is collected every time a patient sees their GP or attends hospital. This is used by patients and care teams to ensure the best care is delivered. With appropriate controls and consent, the de-identified data can also be used to support research to find new ways to diagnose and treat disease and make care better and safer.
North West London and Greater Manchester are home to some of the world’s leading hospitals and research organisations. We want to work across these ecosystems to build an applied research database that can help scientists and companies develop a new generation of tools and services that could help us manage many diseases and, in many cases, prevent them happening in the first place.
Building innovative healthcare technologies is possible only through partnership. We will work closely with local communities and patient groups to involve and engage them throughout in completely new ways, ensuring their data is only used under appropriate controls and consent.
There are substantial opportunities to improve healthcare through advances in genomics, artificial-intelligence and digital health and as a Digital Innovation Hub, we feel that we can undertake cutting edge research and develop new healthcare tools in a trusted way."

Technical Summary

Advanced technologies encompassing digital health, genomics and artificial intelligence (AI) promise to transform healthcare, free up staff time and empower citizens to better manage their health and well-being. This proposal (Discover-NOW, Clinical Trials and Real-World Evidence Hub category) sets out our aspiration to achieve this goal by establishing a secure, real-time, curated longitudinal health record initially focused on the diverse population of North West London (NWL) but in time scaling to all of London. We are also partnering with NorthWest EHealth (NWEH) in Manchester to make even more data discoverable and align functionality across the two leading longitudinal datasets.Trusted and appropriately governed access will support partners to develop new products for direct care that have the potential to dramatically improve outcomes and effectiveness through:
1. Novel clinical trial methodology that identifies new patterns and associations of disease and its effective treatment;
2. The development of apps, sensors and algorithms that benefit from real-time access to appropriately de-identified data encompassing, electronic health record

Discover-NOW builds on the strong foundations of Discover and NWEH:
2.3million diverse citizens from around the world call NWL home, meaning solutions built should be applicable globally;
1.1million additional patients from NWEH;
Deep trust and confidence have already been built with our citizens through their extensive engagement;
Discover, already one of the UKs leading longitudinal datasets, links data for 400 custodians across primary, secondary, community and mental health services and world-renowned specialist hospitals;
NWEH powered the innovative Real-World Evidence (RWE) Salford Lung Study;
Experience in the use of real-world data to improve direct-care and operational efficiency including RWE clinical trials;
Through Imperial College Healthcare Trust (ICHT), we work with leading scientists and clinicians at the forefront of precision medicine, therapeutics and AI;
We have long-standing and successful collaborations with industry that have powered cutting edge research and investment.

To establish Discover-NOW as a leading real-time longitudinal research dataset, we will use the Hub funding to:
Make more de-identified data discoverable by partnering with NWEH;
Move Discover to a high-performance cloud-based computing platform able to support traditional analytics and advanced AI;
Grow industry partnerships by providing access to our expertise and work closely with other DIHs and Local Health and Care Record Exemplars (LHCRE);
Introduce standards that promote the protection of privacy and data security and the proportionate use of data;
Shape what we do through the innovative deliberative engagement as part of our local LHCRE (OneLondon)."

Publications

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