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Researchers from across Imperial College Academic Health Science Centre gathered at a recent workshop to learn more about how to use routinely collected NHS data in research.

The workshop was an opportunity to understand how real world data (RWD) such as electronic health records has been used to develop and evaluate new technologies and treatments for patients and highlight clinical trials and other evaluations where patient data has been used for research to improve outcomes for patients.

More than 90 delegates gathered at the workshop in March, which was also used to identify opportunities and gaps in taking forward impactful RWD studies in North West London.

The event was chaired by Professor Mark Thursz, Director of Imperial College Academic Health Science Centre (AHSC). He said:

“Harnessing the potential of healthcare data is a focus of work for the AHSC.

“Data can help us tackle some of the biggest health challenges we face, including helping us understand better the risks and causes of diseases so that we can put interventions in place and improve health and care for patients.

“The AHSC is leading the way in this. The workshop showcased our RWD capabilities and resources in RWD clinical trials and evaluation and how they have been used to drive improvements in care.

“It was also an opportunity to hear from our delegates on what barriers they face when using RWD and the support, training and tools the AHSC can provide locally to support more research using a RWD approach.

“We hope our delegates found the workshop inspiring and informative as we work to further expand our data work so we can help even more patients.”

Delegates heard from researchers on a range of RWD resources in North West London for clinical trials.

Impactful data studies

,  Director of the North West London iCARE Secure Data Environment, spoke about the iCARE platform and how it can be used to improve quality, safety, and patient experience across the NHS.

The platform provides access to de-identified and routinely collected healthcare data for North West London’s 2.8 million population. It allows researchers and clinicians to translate this data into better care for patients and is being used in several projects including work to create a tool for predicting which hospitalised adults are at risk of experiencing a fall during admission. 

Kavitha Saravanakumar, Chief Information Officer in North West London, spoke about the and- a suite of digital tools available to clinicians and other health professionals who are providing direct care to patients in North West London.  It provides secure and near to real-time  information on how patients are accessing and using services such as GPs, A&E visits and community programmes. The de-identified, linked and longitudinal dataset is used for a range of purposes including research studies such as a retrospective study using WSIC data to look at the association of primary and community care services with emergency visits and hospital admissions of people with cancer in the last 90 days of their life. The study showed that 14 per cent of people had more than three admissions in the last 90 days and 29 per cent of people had two or more A&E visits in the last two week of their lives. This resulted in the recommendation to expand community nursing to reduce the number of acute hospital visits and improve quality of care provided to the patients.

Delegates also heard from Heidi Saunders, Head of Clinical Research Operations in the Joint Research Office at Imperial and Imperial College Healthcare NHS Trust, on the .

This is a database of patients who are willing to be contacted directly about relevant clinical trials and studies and have agreed for their samples and health information to be collected and stored for research.

Researchers have used this facility for projects such as using an existing medicine to improve blood flow and reduce symptoms in patients with dementia and stroke.

Delegates also heard examples on how RWD has been used locally and nationally in clinical trials and studies.

Predicting disease risk

, Consultant Diabetologist at Imperial College Healthcare NHS Trust and Honorary Clinical Lecturer in the Department of Metabolism, Digestion and Reproduction, spoke about work to develop a digital tool to help clinical staff locate and triage people in the hospital with diabetes in real time to prevent complications.

Diabetes is one of the most common chronic conditions in the UK and one in four hospital beds are occupied by people with the disease. Often patients are admitted to hospital for reasons other than diabetes, and may not get specialist diabetes input till after low or persistently high blood sugar occurs. 

Dr Avari is working with a team of clinicians and researchers at Imperial and Imperial College Healthcare NHS Trust to develop a tool that can pull relevant iCare data like previous diagnosis information and blood sugar levels in real-time. The goal is to help the diabetes team spot people in hospital at risk of complications like persistent high or a low blood sugar and intervene earlier.

Ms Martina Brayley, PhD Student at the Institute of Cancer Research (ICR), spoke about her work to  apply a procedure to detect the chances of breast cancer coming back in patients - known as recurrence. The procedure was developed by Martina’s colleagues at ICR Clinical Trials and Statistics Unit (CTSU).

The patterns of recurrence vary within breast cancer subtypes but recurrence can continue to occur up to and beyond 20 years post initial diagnosis and it affects around a fifth of women. 

Historically, disease recurrence information has not been reliably collected in routine health datasets and there is a need to create a reliable dataset that would indicate that a recurrence has happened. 

The new procedure uses cancer data from the to look for signs of recurrence such as further chemotherapy, radiotherapy and hormone treatment after initial treatment for breast cancer has been completed.

The team made up of researchers from the ICR applied the procedure to observational study records linked with routine data. They found that the number of distant recurrences – cancer that has come back in another part of the body - identified was similar to the number of recurrences expected in the whole breast cancer population.

The team uses distant recurrence identified by  the procedure to investigate how lifestyle before and after breast cancer diagnosis influences the chances of the cancer coming back.  

Scaling up

Delegates also heard from a panel which included Dr Rebecca Ghosh, Real World Evidence Specialist at Medical & Healthcare Products, Regulatory Agency, and Mr Shaun Rowark, Associate Director of Healthcare Data Analytics at the National Institute for Health and Care Excellence, on what priorities the AHSC should take forward to expand its work in RWD.

Panellists highlighted opportunities for RWD in several areas such as long-term follow-up of cancer patients and gaining insights into quality and safety in healthcare delivery.

They also highlighted the excellent data resources and infrastructure available and suggested that the AHSC was best placed to take a lead in scaling up RWD clinical trials and other evaluations.

 (AHSC) is a strategic partnership between ÌìÃÀ´«Ã½, Imperial College Healthcare NHS Trust, The , and . It aims to turn scientific discovery into life-changing healthcare solutions.