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NHSX has published its Data saves lives policy paper, which sets out a plan for data sharing across the NHS and social care. The document puts an emphasis on patient controls to enable them to choose the data they want to share and looks at the role of anonymised patient data by researchers.
Underpinning the strategy is an NHS account that uniquely identifies a patient and provides a single entry point for clinicians, patients and clinical systems to connect to health records and data.
In the policy document, NHSX says that Ben Goldacre, who leads the government’s review of health data, will conduct a rapid review into the more efficient and safe use of health data for research. The review aims to gather real-world stories of the impact of data and how it can be shared and used, and, conversely, the impact when not shared, as well as common blockers to using health data for research and analytics.
According to the policy document, health data will need to be held outside of electronic patient record (EPR) systems and stored, instead, in the cloud. “The data can then be easily accessed and updated by both third-party and NHS systems, rather than just third-party suppliers,” it says. “Data will be controlled in a way that ensures secure and safe access, in line with information governance principles.”
For chief technology officers and technical architects, the policy document discusses the need for quick access to the information needed for running systems effectively. This includes an understanding of the wider data, which, the policy document notes, is needed to build and buy the right systems.
The document sets out plans to drive interoperability across the health and care system by using open standards to make it easier to share data safely and efficiently. NHSX also stresses the importance of clear cyber security guidance to make sure that systems, and the data held within them, are as safe as possible.
By winter 2021, the NHSX aims to agree a target data architecture for health and social care, outlining how and where data will be stored, shared and sent.
Recognising that there is a large number of legacy systems across the NHS, in the policy document NHSX sets out its ambitions to break down legacy IT barriers. It plans to map the technical debt for national systems, and prioritise what must be addressed and completed through relevant programmes of work by March 2022.
“We want to reshape our legacy systems and platforms into smaller, discrete services by creating national platforms that can talk to each other and work together, and so can easily be used to access and share data,” it says. “This will avoid delays in diagnosis, prevent tests from being repeated unnecessarily, and get people the treatment and care they need.”
The document lists a number of goals related to the collection and reuse of data. First, all data will need to be validated at the point of entry to improve data quality. Second is the need to make data discoverable, and third is ensuring that data is not duplicated.
NHSX also wants all clinical data to be stored in a way that is accessible via application programming interfaces (APIs) published on the API gateway. NHSX also says the data needs to be digitally signed to an appropriate level.
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Discussing the policy document, Adam Steventon, director of data analytics at the Health Foundation, said: “We very much welcome the data strategy. Health data has played a critical role in the last year – from tracking Covid-19 outbreaks and developing treatments, to getting people booked in for their vaccines. It is critical that the use of data is accelerated if the NHS is to tackle the backlog of care and address the massive health challenges facing the country.
“It is particularly positive that the government has committed to building analytical and data science capability in the NHS and to improving data on social care. To ensure that the full potential of data can be realised, the government must ensure transparency on how it will be used and the rights and options people have, as well as engaging with the public and healthcare professionals to build trust and show people how their data can improve the NHS and save lives.”
In the policy document, NHSX also discusses a commitment to open source and open technologies. It says that by the end of 2021, “we will begin to make all new source code that we produce or commission open and reusable, and publish it under appropriate licences to encourage further innovation (such as MIT and OGLv3, alongside suitable open datasets or dummy data)”.
Looking at NHSX’s goal to make work available as open source, Martin James, vice-president for Europe, the Middle East and Africa at Percona, said: “Conducting work in the open and supporting more effective collaboration are major goals for open source, and this approach should lead to better results for the community and therefore for patients.”
By spring 2022, NHSX wants to be able to provide services to find and retrieve records from wherever they are located across health and social care. In the same timeframe, it wants to develop a suite of new APIs. Available via the internet, and available both to patients and clinicians, these new APIs will enable access to clinical systems, web pages and apps.
In the ministerial foreword to the policy document, health secretary Matt Hancock said: “Putting this strategy into action will deliver better treatment for patients, better health results for people who need care and support, and better decision-making, research and support for our colleagues on the front line.
“It also sets out how we will support the developers and researchers who we’ve all seen have so much potential to transform health and care. They save and improve lives every day. They deserve our tireless support, just as they have worked tirelessly for our citizens.”