02 Feb 2023
Bradley Quinn: Improving GM’s health through data – the Secure Data Environment
The recent inquiry from the House of Lord Science and Technology Committee predicted a concerning decline in the number of clinical academics in the NHS.
At the peak of the pandemic, only 13% of clinical academics reported being able to spend as much time as they should on research. [i]
And at a time when the NHS, and the economy as a whole, is under continued financial pressure, why should we continue to invest in R&D?
First, research is fundamentally about building evidence and knowledge. It’s about providing us all – including those that design and deliver healthcare services – with more information about what works, what doesn’t work, what could be better, and how we continually improve the systems around us.
Importantly, R&D leads to life-saving breakthroughs that prevent ill-health, support early diagnosis, enable more effective treatment and faster recovery, and create better outcomes for our patients.
There are some very stark recent examples of this, particularly through the pandemic. Over a million people across the UK have taken part in Covid-related research, including projects like the Recovery Trial – run by the University of Oxford – which discovered two drugs, Dexamethasone and Tocilizumab, that are beneficial in supporting recovery.
Research also enables healthcare professionals to improve the services around them. Lots of health researchers are at the same time practicing clinicians (those clinical academics), developing and testing imaginative solutions to address real problems they experience each day.
It’s also well evidenced that hospitals who are research active (and have a higher proportion of investment and engagement in R&D) have better outcomes – with higher patient satisfaction, higher staff satisfaction, and lower mortality rates in the UK. [ii] [iii]
But none of this is possible without access to the right kind of data.
NHSE’s ambition is that by 2025 the NHS will have a world leading country-wide health data research infrastructure that enhances patient care, sustains the NHS and supports innovation. [iv]
And that’s where Secure Data Environments (SDE’s) come in.
Secure Data Environments are highly secure computing environments that provide remote access to health data for approved researchers to use in their analysis. They put virtual walls around data to ensure that users can only access data for which they are approved and provide them with the tools they need to conduct their work.
I often describe SDE’s as a virtual version of the glove boxes in a lab which contain some form of sensitive material that needs to be handled carefully.
If the “sensitive material” is health & care data, the glove box itself is the SDE. You can still interact with the data and do important things with it – but in a controlled & managed way.
This hasn’t always been the model for data access in the NHS.
For a long time public services have relied on a model of data dissemination, where imperfect copies of data are distributed to users with little control over what happens once the data is released, and there are only limited protections over how that data is then used.
SDE’s change that dynamic.
Rather than the data moving to the user, the user comes into a strictly controlled environment that operates in line with a framework known as the “Five Safes” – a best practice approach for data protection developed by the Office for National Statistics.
At Health Innovation Manchester, we’re working alongside partners from across the local health & care research and innovation ecosystem to lead the implementation of a secure data environment.
This builds on our work to accelerate data sharing through the Greater Manchester Care Record as an important input to the rich, linked patient data that’s available in the SDE.
We saw some fantastic examples of patient data being used securely to inform our understanding of the impact of Covid-19 amongst communities across Greater Manchester throughout the pandemic – including inequity in vaccine uptake rates[v], changes in healthcare access for people with long-term conditions (such as diabetes[vi]), and mental health outcomes in lockdown[vii].
Our SDE will take us even further – supporting various types of research including real-world translational studies, health economics, epidemiological studies, service evaluations, AI / algorithm development and clinical trial feasibility, recruitment, and follow-up.
We’re building our SDE on the same digital infrastructure that’s positioned Greater Manchester as an analytics leader in the NHS nationally. This design facilitates much closer working between health & care data teams and researchers – both using data and tools that originate from the same place – to share approaches, techniques and methods and translate high quality research into practice.
The GM SDE forms part of a wider regional collaboration – the North-West SDE – which has secured significant national investment to provide near-real time, privacy protecting, access to rich linked data across a population of almost 8 million citizens.
And at its centre, the SDE is driven by deep dialogue and engagement with people all across Greater Manchester, to build and maintain trust, including those communities that have traditionally been excluded.
The vast majority of people are supportive of their data being shared for research – so long as its for the right reasons, with the right protections, and creates clear public benefit.
Co-design and complete transparency are central principles for the SDE, with members of the public embedded throughout our decision-making and design.
The NHS ambition here is clear, and as lead for the GM SDE programme, I’m excited to be working with colleagues across our city-region – and beyond – as Greater Manchester continues to lead the way in utilising data for health research and innovation.
Read more on the news that Greater Manchester, as part of a collaborative across the North-West, will receive funding from NHS England to begin the development of a sub-national Secure Data Environment for research & development.
Matt Hennessey, Chief Intelligence and Analytics Officer at Greater Manchester Integrated Care, and Bradley Quinn, are speaking about how data is being used from the longitudinal record to accelerate innovation in Greater Manchester, including the development of the North-West SDE, at the HETT North event on 2nd March 2023.