Cancer data from NHS Digital has now been made available in a secure environment to enable researchers to understand the impact of COVID-19 on people affected by cancer.
DATA-CAN, the UK’s Health Data Research Hub for Cancer, has worked with NHS Digital to provide timely and secure access to cancer specific data, curated by NHS Digital’s National Disease Registration Service, alongside national population health datasets in the NHS Digital Trusted Research Environment (TRE).
TREs are secure spaces where authorised researchers can access the data they need for approved projects. The de-identified data is analysed in a secure environment without being downloaded, to provide safe and secure data for analysis and research.
This partnership will provide researchers with timely data access to improve our understanding of the current impact of COVID-19 on the referral, diagnosis, treatment, and outcomes of patients with cancer, and those who may become unwell in the future. The ambition is to look at how this information can help develop new services, tests and treatments and ultimately save lives.
NHS Digital's TRE is supported by the recent announcement by the government of up to £200 million being invested to enable more secure and efficient access to NHS data through TREs and digital clinical trial services.
This will ensure that the NHS will be able to deliver new treatments faster and improve patient care and will develop the NHS Digital TRE to allow it to be made available to larger numbers of users in due course.
Professor Geoff Hall, DATA-CAN’s clinical lead, professor of digital health and honorary consultant in medical oncology at the Leeds Cancer Centre, said: “As a cancer doctor with a specialist interest in health data research, utilising this national Trusted Research Environment allows us to better understand the impact that COVID-19 has had on NHS cancer services.
"The same data, used effectively and responsibly and with the support of patients and the public, has the potential to drive research into new, more effective ways to diagnose cancer early and could support the development of new treatments to improve people’s lives. It is a really exciting development and has the potential to be a real game-changer.”
Michael Chapman, NHS Digital Director of Research and Clinical Trials said: “Safe access to data is absolutely vital in helping medical researchers explore the impact of COVID-19 on cancer services and outcomes, and more widely to understand the causes of cancer and how best to diagnose, prevent and treat it. NHS Digital is committed to making data accessible to researchers in a safe and trusted environment that safeguards patient data at the same time as allowing for world-class research.”
The response to COVID-19 has shown that timely and appropriate access to high quality data and the right technology can help reshape the health and social care system for the better. This includes NHS DigiTrials which provides data services to support clinical trials, reducing the time, effort, and cost of developing new drugs, treatments, and services for patients.
Professor Mark Lawler, Professor of Digital Health at Queen’s University Belfast, Scientific Director of DATA-CAN and Chair of the Scientific Steering Group of this new initiative said: “This is a very exciting development as it allows us to produce precise scientific evidence of the continuing impact of COVID on cancer patients and cancer services. This cancer intelligence will empower us to address the cancer backlog that COVID has precipitated and build back both better and smarter, in order to deliver the enhanced cancer services that our patients deserve”
Alison Allam, DATA-CAN Patient and Public Involvement and Engagement Group, said: “Patients and carers understand the benefits of earlier and more accurate diagnosis and smarter, kinder treatments for cancer and the important role that health data research plays in this. However, we want to be reassured that our medical data will be treated confidentially and responsibly by those carrying out research.
"We therefore welcome the improved safety and reassurance from such data remaining within NHS Digital’s Trusted Research Environment, whilst still allowing access to approved researchers to help improve outcomes for patients.”