Write your grants right, with the support of Discover-NOW

By Maria Ilia, Head of Research and Implementation, Imperial College Health Partners

Last week I attended Imperial College London’s Research Symposium. It was the first time we had all been face-to-face since before the pandemic, and the back to school buzz was palpable. Having worked for many years in research, it reminded me how this time of year feels – the excitement at resuming projects and collaborations and the anticipation of sharing impact across the research community and identifying new opportunities for funding and development. It was brilliant to meet so many academic colleagues and I was proud to share details of the Discover-NOW dataset, a gateway to one of the largest deidentified linked health and care datasets in Europe (2.5 million people). Discover-NOW can connect researchers to a real world evidence validation ecosystem through a Trusted Research Environment, which has been co-designed by citizens. It is a valuable resource for academic colleagues that allows them access to deidentified NHS data collected from over 350 NHS organisations across North West London, so they can validate their proposed studies, or use retrospective data to conduct new ones, saving time, effort and expense. So, before you write this year’s grant applications, discover how our data could support your health research project. 

Discover the feasibility  

As a researcher, it is not always clear if real world data sources can fully answer the research question of interest and the associated analyses. Furthermore, numerous methodological and data collection obstacles can emerge during study execution. However, some of these study challenges could be proactively addressed through an early feasibility study, concurrent to protocol development. For example, our recent exploration of the feasibility of running a UK trial for a Chronic Kidney Disease (CKD) treatment for industry partner, AstraZeneca. To accurately estimate the result of applying this protocol to CKD patients in the UK, ICHP turned to the real-world data contained within the Discover dataset. Working with an array of different experts and clinicians, the ICHP team were able to identify 12,163 patients with a CKD diagnosis, of more than one million people in the Discover dataset who met the age and sex criteria. However, after applying all the different inclusion criteria to the data, the team were able to identify just 30 people who would have been eligible for the trial. Furthermore, after excluding anyone affected by renal or cardiac disease from this select group, they found that they were left with no patients at all. While this may not have been the answer AstraZeneca were hoping for, it’s a resounding endorsement for the value of using deidentified electronic health records, like those available in Discover, to help prove or disprove the feasibility of a clinical trial.  

Discover a gap 

Retrospective studies are the right first step to formulate a hypothesis that may otherwise need high investment and time on a prospective design. For example, in collaboration with a North West London (NWL) GP, the Discover-NOW team examined the burden of asthma and risk of poor outcomes in children and young people in NWL, aiming to guide the NWL clinicians and managers responsible for providing and commissioning care, to reduce modifiable risk factors for poor asthma outcomes, and subsequent unscheduled health care research.  The team conducted a retrospective analysis of care for children and young people in NWL, who had a diagnosis code for asthma in General Practice between April 2018 and March 2019, using the depersonalised dataset accessed through Discover-NOW. This study was completed over the last 12 months and demonstrates that up to 10% of children and young people with asthma in NWL face potential life-threatening asthma attacks and remain at risk of poor outcomes due to their asthma. Additionally, it is clear from this data that not all asthma exacerbations were coded as such by the general practitioners, making it difficult to identify those in need of a post exacerbation review, as recommended by NICE and the SIGN/BTS (British Thoracic Society). These results highlight that utilisation of dynamic clinical risk registers available in North West London could easily facilitate recognition of risk and optimisation of care for children and young people with asthma. 

Discover patients 

Discover-NOW also addresses the challenge of slow, inefficient and expensive protocol development and feasibility in patient recruitment. By working with a cross sector and multidisciplinary project team to run protocol queries, refine and identify patient cohorts and potential recruitment sites and support patient engagement in the design of the study. For example, our consent-to-contact offer via the NWL Health Research Register (NWLHRR) is becoming the trusted health research gateway for both researchers and patients in NWL. With over 60,000 volunteers signed up and a GDPR compliant methodology to identify eligible patients for research studies, the NWL HRR has supported academic, industry and NHS sponsored studies with thousands of people being invited to participate.  

For example, the register was recently selected to support with recruiting eligible patients to participate at a COPD study sponsored by Royal Brompton NHS Trust, sourcing over 130 eligible patients to the study. The register also supported the co-design of a Type 2 diabetes (T2D) risk prediction tool across NWL’s T2D care pathway in a study sponsored by NHS, SMEs, pharma and academia, converting over 12% of eligible patients from the register to participate. And during COVID-19, the register gave the NWL population the opportunity to contribute to research for CovidLife and COVIDENCE national surveys, sponsored by academic and charity bodies.  

Research is an exciting part of healthcare to be involved in – the thought that an idea you have, could one day transform a person’s life is motivating. But it can also be a long process and can take a lot of patience. By considering investigations using Discover-NOW as part of your grant application process, you will be able to access a wealth of data that might just be able to get you closer to publication, quicker. To find out how we can support your health research project contact Danny.Bosch@imperialcollegehealthpartners.com.