Improving cancer patient outcomes through a national cancer Trusted Research Environment
As someone who has a huge interest in the power of health data to improve patients’ lives, I have been an advocate for ‘safe havens’ such as Trusted Research Environments (TREs) for several years. I am passionate about the possibilities to unlock, enable and enhance health research and deliver tangible benefits to patients, such as new treatments, diagnostic tools and better care.
So what exactly is a Trusted Research Environment? A Trusted Research Environment or TRE is a secure digital environment that holds data and enables access to it for analysis. Previously, researchers would download datasets onto their own computers and run their own analysis on it. In a TRE, the data stays in a secure location and approved researchers, undertaking approved projects, are given access to the data remotely. The researchers who are permitted to use the TRE can only export analytics on the data such as tables and figures, they can’t actually download individual-level data.
One of the main benefits of TREs is that they are very secure and only accessible by researchers conducting research that has been through a formal approval process. There are understandably many concerns from patients and the public about the use of their health data for research. By maximising the use of TREs, some of these worries about transparency and trust can be mitigated.
As the national IT partner for the NHS in England, NHS Digital has responded to the current pandemic by developing a national Trusted Research Environment to provide researchers with essential de-identified health data to quickly answer COVID-19 related research questions. The aim is that research projects carried out utilising the NHS Digital TRE will help to guide national decision making and interventions, thereby reducing the severity of the impacts of COVID-19 on health services and patients.
What has this got to do with cancer? As the Chief Data Officer for DATA-CAN – the health data research hub for cancer, my aim is to make high quality data more accessible for cancer researchers and health professionals in the NHS, universities and life science sector, to help them carry out essential research. A national cancer Trusted Research Environment is central to achieving this aim and this is why we are so pleased to be working with NHS Digital on the national cancer TRE. We know that COVID-19 has had a devasting impact on cancer services and patients, and one of our main roles over the last 18 months has been to lead the health data response to the crisis and help health services to mitigate against the worst effects.
The national cancer TRE is opening up access to de-identified cancer data from across the whole of the United Kingdom to approved researchers from trusted organisations. The University of Leeds and Leeds NHS Teaching Hospitals Trust, are leading on this work on behalf of DATA-CAN which will enable important research on rates of cancer referrals, diagnoses and treatment. In the first phase, cancer data from the nationally collected NHS Hospital Episode Statistics (HES) and COVID-19 testing is being made available to approved researchers. Phase 2 will see national cancer datasets on outcomes, services, chemotherapy and radiotherapy being made available.
Data scientists at DATA-CAN are already conducting important data analysis on the impact of COVID-19 on cancer patients via the national TRE. In the short term, we look forward to collaborating with researchers in the NHS and universities on further data analysis projects to fully understand the impact of the global pandemic. In the future, the aim is that collaborations will broaden and the use of TREs will allow analysis on a range of healthcare questions to improve patient outcomes and save lives.
Find out more about Health Data Research UK’s White Paper on Trusted Research Environments here.
Find out more about DATA-CAN’s work on the cancer Trusted Research Environment here.