- Patients to have greater access to GP records through the NHS App and power over how data is used including simplified opt-out processes.
- Researchers will be able to access data in secure ways through secure data environments to drive innovation and deliver cutting-edge patient care
- Using data to drive greater efficiency will support the NHS as they work to clear the coronavirus (COVID-19) backlog
- £25 million has been announced for rapid digitisation of social care to meet commitment for at least 80% of social care providers to have digitised care records in place by March 2024
Millions of patients will benefit from faster, more innovative treatment and diagnosis following publication of a new data strategy for health and social care.
Our new data in health strategy, Data saves lives: reshaping health and social care with data, published today (Monday 13 June 2022), focuses on 7 principles to harness the data-driven power and innovation seen during the pandemic to drive transformation in health and care, creating a secure and privacy-preserving system that delivers for both patients and professionals.
The strategy sets out ambitious reforms for the health and care sector, transforming the way data is used to drive breakthroughs and efficiencies, helping to tackle the COVID-19 backlog and create a system fit for the future.
Launching the strategy at London Tech Week’s HealthTech Summit, Health and Social Care Secretary Sajid Javid is expected to say:
We are embarking on a radical programme of reform that will make sure the NHS is set up to meet the challenges of 2048 – not 1948, when it was first established.
Earlier this year, I set out a range of stretching targets for digital transformation in health and care, and we’re making great progress […]
This landmark document will look at how we can build on this momentum and apply the lessons challenges ahead of us, including tackling the COVID backlog and making the reforms that are vital to the future of health and care.
It shows how we will use the power of data to bring benefits to all parts of health and social care.
The principles set out in the data strategy are:
- improving trust in the health and care system’s use of data
- giving health and care professionals the information they need to provide the best care
- improving data for adult social care
- supporting local decision-makers with data
- empowering researchers with the data they need to develop life-changing treatments and diagnostics
- working with partners to develop innovations that improve health and care
- developing the right technical infrastructure
To give patients greater confidence than ever that their personal information is safe, secure data environments will be made the default for NHS and adult social care organisations to provide access to de-identified data for research. This means data linked to an individual will never leave a secure server, and can only be used for agreed research purposes.
Following a £200 million investment, trusted research environments (TREs) – a form of secure data environments – will be established to better enable researchers to securely access linked NHS data while maintaining the highest levels of privacy and security.
This will enable the NHS to deliver cutting-edge life-saving treatments and diagnosis to patients faster through clinical trials, and facilitate more diverse and inclusive research to tackle entrenched health inequalities, which will in turn allow the NHS to work through the COVID-19 backlog at a faster pace.
Speaking at the HealthTech summit, Health and Social Care Secretary Sajid Javid is expected to say:
We will make sure researchers and innovators are able to access data safely and efficiently.
In this country, we have some of the world’s best research institutes and universities, a powerhouse life sciences sector, and a thriving HealthTech industry.
When this ingenuity meets the insight of health and care data, the opportunities are incredible.
The data strategy also contains key commitments to give patients greater access to and control over their data, including by simplifying the opt-out processes for data sharing and improving access to GP records in the NHS App by giving patients access to their latest health information by November 2022. Further improvements, including being able to more easily request historic information including diagnosis, blood test results and immunisations will be made available by December 2023.
The public will also be consulted on a new ‘data pact’, which will set out how the healthcare system will use patient data and what the public has the right to expect.
Use of the NHS App has boomed throughout the pandemic. 28 million users already have the ability to access their data and services, and statistics show that, in April 2022 alone, the NHS App enabled 1.7 million patients to order repeat prescriptions, 150,000 primary care appointments were managed and 5 million people viewed their GP record, saving vital clinician time.
With an ambition for the NHS App to be a one-stop shop for health needs, the strategy commits to a target of 75% of the adult population to be registered to use the NHS App by March 2024.
Speaking at the HealthTech summit, Health and Social Care Secretary Sajid Javid is also expected to say:
We will improve trust in data, which is the currency that data-driven technologies need to function.
We will work with the public, including people working in health and care, to develop a new pact on data, which will set out how we will use health and care data, and what the public has the right to expect.
This will include the ability to opt out of sharing data. Because, although we know that most people want their data to be used for good, we will make the opt-out system simpler and more transparent.
Better use of data is central to the government’s mission to integrate health and social care. Following a £150 million funding commitment to drive rapid digitisation in the adult social care sector, the strategy outlines how integrated care records will enable smoother transitions between NHS services and social care, including quicker discharge from hospital, freeing up valuable space.
Currently only 45% of social care providers use a digital social care record and 23% of care home staff cannot access the internet consistently at work. The data strategy reinforces the ambition for at least 80% of social care providers to have a digitised care record in place by March 2024.
To support this, £25 million will be made available in 2022 to 2023 to scale up the investment and implementation of digital social care technology across England with integrated care systems, including adopting digital social care records (DSCR) to ensure data is captured at the point of care and can be shared between care settings.
Technologies like remote monitoring tools are already being used successfully to provide more targeted care. The government’s digital home care projects have used remote monitoring to support over 740,000 people with care at home, including care homes residents, improving their health outcomes and reducing the burden on the NHS, supporting clinicians as they focus on tackling COVID-19.
Speaking at the HealthTech summit, Health and Social Care Secretary Sajid Javid is also expected to say:
We must be open and honest about the fact that social care lags behind the NHS when it comes to digital transformation.
Our social care system is home to some of our most vulnerable in our society, and so the opportunities on offer are even greater. This strategy shows our determination to close the digital divide that exists between the NHS and social care.
The data strategy will be followed by the publication of the digital health and care plan shortly, which brings together government’s aspirations for digital transformation for health and social care with an ambitious delivery plan.
Simon Madden, Joint Head of NHS Transformation Digital Policy Unit, said:
This data strategy commits to resetting the relationship with the public on the use of health and care data.
Building and maintaining public trust is a core ambition, underpinned by the recognition that health data is patient data above all else.
NHS Digital CEO Simon Bolton said:
The ‘Data saves lives’ strategy is a significant milestone in enabling us to deliver the digital transformation of the NHS, where data and technology support a health and care service fit for the future.
Better access to data will be vital for the NHS recovery, and patient trust and confidence must be central to this. We are committed to giving patients more control and increasing transparency over how data is used to improve health and care services.
Our TRE is already supporting life-saving clinical research and innovation, and we are working to deliver a new and improved national TRE service with improved accessibility, and the highest standards of privacy and security.
Professor Ben Goldacre, author of the recent Goldacre review and Director of the Bennett Institute at the University of Oxford, said:
NHS data has phenomenal untapped power. This is a momentous document, because it reaches beyond aphorisms and gets into crucial technical detail.
The move to use TREs, in particular, is historic. TREs earn public trust by provably protecting patients’ privacy and by sharing detailed transparent audits of all data usage. They also drive efficiency, because all users working with the same data sets can use common tools for data curation and analysis.
The small number of secure platforms described in this document will finally unlock the vast potential in all patient data for research and for improving NHS care. Done right, they will address the privacy concerns of the past and drive faster, more reliable, more secure and more efficient use of data, from more teams than ever before.
Sir John Bell said:
We have shown during COVID that we have some of the best data in the world, but that it needs integration across all aspects of care to provide real benefits for patients and for the NHS.
This data strategy ‘Data saves lives’ provides the framework that will allow our data assets to be productively used, enhancing all aspects of care. It genuinely will save many thousand of lives every year.
Sir Martin Landray, Professor of Medicine and Epidemiology at the University of Oxford and co-lead of the RECOVERY trial, said:
Having information on the right patients, at the right time, and available to the right people is essential for any high-quality health and social care system. As a doctor, I see this need every time I meet a patient in one of my clinics. And as a researcher, I know just how important this is in our quest to understand the causes and consequences of ill health and how to improve them – whether that be through studying disparities in health and health care or, in my own area, running clinical trials to find out which treatments deliver true benefits for patients.
As we look ahead, the lessons from trials such as RECOVERY are going to be just as important for other major causes of ill health – including severe influenza, heart disease, common cancer, depression and dementia. Careful use of health data, not just from hospitals but also from across the primary and social care system, is going to be crucial for the important task of planning and conducting clinical trials that drive improvements for those major burdens for patients, their families and the NHS. The ‘Data saves lives’ report is an important step in that direction.