Discover-NOW - Our Hub for Real World Evidence

About Discover-NOW

• The purpose of Discover-NOW

  Discover-NOW is the Health Data Research Hub for Real World Evidence. It is a unique partnership, led by Imperial College Health Partners, bringing together NHS organisations, globally recognised academic, technology, industry 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.

  Discover-NOW Hub provides access to one of the largest depersonalised linked data sets in Europe – initially across a population of more than 2.3 million and scaling to nearly 9 million over time – in a safe, secure and trusted environment. The Discover-NOW Hub offers the health and research sector leading ‘regulation ready’ and GDPR compliant tools and technologies to support health research and improvement. These include a high- performance analytics environment along with methods and expertise, a feasibility and research recruitment tool as well as a consent to contact register of over 6,000 people.

  As such the Discover-NOW Hub enables clinicians, researchers and scientists, supported by the people of North West London, to accelerate the development of new treatments, devices and apps to more effectively manage, and even prevent health conditions through research,

  Working with data from the NHS in London and Manchester, with appropriate controls and consent, to support research to find new ways to diagnose and treat disease and make care for patients better and safer.

• How Discover-NOW operate

  Discover-NOW Hub provides access to one of the largest depersonalised linked data sets in Europe in a safe, secure and trusted environment. The Hub has specialised data scientists and analysts on hand to help support data access requests and use of a growing range of ‘regulation ready’ and GDPR compliant tools, technologies and methods for the research and development community, including:

  • The North West London Health Research Register : register of people living in North West London interested in getting involved with health research opportunities relevant to them. By joining the register they are able to get involved (consent to be contacted) with studies that could contribute to a healthier future for everyone.
  • An online tool for feasibility and recruitment called FARSITE (Feasibility And Recruitment System for Improving Trial Efficiency) this tool enables GPs to decide whether their patients should be contacted to be invited to participate in specific research studies through searching, and finding patients for research opportunities, whilst still preserving their confidentiality.

  The Hub is  governed by North West London data controllers and access to the dataset is mediated by the North West London Data Access Committee.

• Discover-NOW's services

  Who are the Hub’s services for?

  The services of Discover-NOW are designed to enable clinicians, researchers and scientists, supported by the people of North West London, to accelerate the development of new treatments, devices and apps to more effectively manage, and even prevent health conditions through research.

  • Real world evidence studies providing evidence of clinical and commercial impact in real life settings for real patients.

  For example: Imperial College London Faculty of Medicine National Heart and Lung Institute at the Royal Brompton through Discover-NOW’s NWL Health Research Register are carrying out a three year-long observational study that aims to investigate any exacerbation of COPD symptoms.

  • Retrospective RWD studies to make improvements to existing products or map out clinical pathways (following individual and group patient pathways) to improve commercial and clinical effectiveness

  For example: In collaboration the Discover-NOW team are examining the burden of asthma and risk of poor outcomes in children and young people in NWL, aiming to reduce modifiable risk factors for poor asthma outcomes, and subsequent unscheduled health care.

  • Clinical trials and prospective research that identify patients and new patterns and associations of disease and how to treat these effectively

  For example: Through the Hub’s partnership with NorthWest EHealth we are joining nearly 50 organisations participating together in the  COVID-19 Diagnostics Evidence Accelerator, a collaboration to advance the worldwide development of diagnostics into COVID-19 through real-world data.

  • Development of new devices, health apps and algorithms that can be tested/validated in near real time through secure access to a de-personalised data asset.

  For example: The Hub’s team are using the depersonalised dataset to measure the impact of new technology in cardiac monitoring pathways to enable further insights across the entire cardiac monitoring pathway required by NICE for a technology appraisal.

• How Discover-NOW benefits patients and the public

  Discover-NOW can only revolutionise the way health information is used to treat and prevent disease in the future with the support and trust of our communities and wider population. We are  therefore proud to be partnering with OneLondon Local Health Care and Record Exemplar programme in their delivery of one of the most progressive public engagement programmes in the UK to build trustworthiness and confidence in how health data is used.