Author: Kristin-Anne Rutter, Executive Director, Cambridge University Health Partners
The NHS holds extraordinary data, including decades of patient records, diagnostic results, prescribing histories, and genomic tests.
That data can help researchers understand what causes diseases, identify who might be vulnerable so that they can start treatment before someone gets very sick, create new drugs that will save lives and track how well treatments are working. All those benefits will make the NHS more productive. Data is also the fuel that drives AI – as I always say, no data, no AI.
Yet for too long, that data has been locked away in fragmented systems, governed by different processes, inaccessible to the researchers who could use it to change lives.
When I took over at Cambridge University Health Partners, I was determined to create a system that put the region’s health data to work for the benefit of patients, and one of the results is the Eastern England Secure Data Environment. It is hosted by the NHS – through our partners at Cambridge University Hospitals – and delivered in partnership by Health Innovation East and Cambridge University Health Partners. It is the largest regional research resource of its kind in the UK, allowing safe access to de-identified data from NHS organisations that serve almost 12 million people, enabling new research in the public interest and at a scale and speed that simply was not possible before.
Co-designed with members of the public, our goal is to minimise the movement of the data, which never leaves the NHS, yet maximise access to approved users from industry, academia and the charity sector.
I make no apology for including industry in that list of users. The sheer scale of global health challenges means we need all sectors joining forces to tackle disease. It is also a way for the NHS to reinvest in its digital infrastructure, which not only underpins data for research but also clinical care.
Critical to the SDE’s success is gaining and maintaining the trust of both patients and the data controllers – the hospitals and GP surgeries. That is why we have established a strict, ethical approval system for all users through a committee that is 50% patients, involved the public throughout the design process and created a secure environment allowing the NHS to be both the custodian of its own data and the engine of medical discovery.
Success will mean new treatments for diseases that have so far confounded research, and a more productive health service. I now look forward to proving the value of the SDE investment to date, and eventually to integrating our work into the national Health Data Research Service.