New health data strategy for England promises privacy, tackles COVID backlog

The new data in health strategy, Data saves lives: reshaping health and social care with data, focuses on seven core principles, with a particular emphasis on improving the privacy and security of patient’s data, digitising social care, and enabling clinicians and researchers to have legitimate access to the right data in order to improve care and deliver life-saving treatments.

These principles are:

1. Improving trust in the health and care system’s use of data

2. Giving health and care professionals the information they need to provide the best care

3. Improving data for adult social care

4. Supporting local decision-makers with data

5. Empowering researchers with the data they need to develop life-changing treatments and diagnostics

6. Working with partners to develop innovations that improve health and care

7. Developing the right technical infrastructure

“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,” Javid said in prepared remarks at London Tech Week.

“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.”

Greater control over patient data, and pioneering research with TREs

The strategy, which covers only England due to devolved decision-making in healthcare, ties back to Javid’s earlier ambitions to focus reform in healthcare on four P’s: prevention, personalisation, performance, and people – and puts a heavy emphasis on giving patients greater confidence that their data is being used appropriately.

The data strategy contains key commitments to give patients greater access to and control over their data, including simplifying opt-out processes for data sharing and improving access to GP records through the NHS App. On the latter, there’s a commitment to give patients access to their latest health information through the app by November and more detailed historical information, such as blood test results, immunisations, and diagnosis, a month later.

The strategy also introduced so-called trusted research environments (TRE). These secure data environments will be made the default for NHS and adult social care organisations to provide researchers with anonymised data for research purposes.

With this data linked to an individual, but never leaving a secure server and only to be used for agreed research purposes, there’s a belief that TREs will better enable researchers to securely access NHS data, while maintaining the highest levels of privacy and security, and facilitating more diverse and inclusive research – all of which should help the NHS to work through the COVID-19 backlog at greater pace.

When announcing the new healthcare data strategy, the government revealed that it would invest another £200 million in the establishment of TREs. Javid said that 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.

In the new strategy, the Department of Health and Social Care (DHSC) recognised last year’s privacy controversy, which saw over one million people opt out of a NHS Digital data sharing initiative, saying that it did not sufficiently explain the programme, and admitted that it did not listen and engage well enough.

The strategy also highlighted its NHS COVID-19 Data Store as a case study for how data should be managed in the NHS, with the Data Store helping decision-makers to understand how COVID-19 was spreading, to ensure critical equipment was supplied to those with the greatest need, and to support clinical research. Despite this, the Data Store has come under the scrutiny of late given the involvement of US data analytics firm Palantir, particularly in relation to who has access to health data and a lack of transparency surrounding government contracts.

EPR and NHS App targets

The new document, which was drafted last July to some backlash from privacy campaigners, pledges £25 million over this financial year to accelerate the adoption of digital social care records, and this marks part of Javid’s plan for 80% of social care providers to be using digitised records by March 2024.

The Secretary of State used the launch of the new strategy to reaffirm his ambition for NHS to ensure 90% of electronic patient records (EPRs) by the end of this year, which said was on track with a target of 75% adult users of the NHS App by March 2024. Javid said that approximately 63% of the adult population currently use the application.

NHS App usage boomed throughout the COVID-19 pandemic, with UK government saying that 28 million users had the ability to access their data and services, and that, in April 2022 alone, the app enabled 1.7 million patients to order repeat prescriptions, 150,000 primary care appointments were managed, and five million people viewed their GP record.

A nod to NHSX and NHS Digital merger

Javid gave a nod to the recent NHSX and NHSD merger at London Tech Week, saying that the consolidation of the two digital bodies would be good for health and social care. Commentators have previously applauded the move, while suggesting that the consolidation of strategy and delivery departments could complicate accountability and ownership around digital delivery, and result in ‘too many chiefs’ at the newly-bolstered NHS England & Improvement (NHS E&I).

“I remember when I when I first came into this office, one of my very first decisions was to bring what was NHSX and NHSD (NHS Digital) and put that together, and to merge it with NHS England,” said Javid on Monday.

“Imagine any one of your organisations, or indeed any FTSE100 company…allowing responsibility for one of the most important levers of change, your digital transformation, to sit outside that organisation, especially an organisation that is as crucial to the nation’s health and happiness as the NHS.

Dr Tim Ferris, national director of transformation at NHS England, added his thoughts on the new strategy:

“The joining of these NHS bodies will also improve co-operation and provide the strong national leadership that is needed to support the recovery of NHS services, address waiting list backlogs, and support hardworking staff, all while driving forwards an ambitious agenda of digital transformation and progress.”

Industry reaction to the new NHS data strategy

Private and public sector industry observers reacted positively to the new NHS data strategy.

Ben Goldacre, director of the University of Oxford’s Bennett Institute and author of the recent Goldacre review, applauded the new document’s use of TREs by default, its light-touch governance and focus on open code.

Jess Morley, policy lead at Bennett Institute, said on Twitter that the strategy showed a “rare willingness to move beyond aphorisms, and get into technical detail”, with the document not shying aware from complex questions around data architecture, and setting a ‘clearable achievable and readily available roadmap.’

Stephen Slough, CIO at Dorset County Hospital NHS Foundation Trust, said the new strategy looked promising and echoes a lot of what is already happening at Trust level.

“We have a mature analytics platform already across our ICS in Dorset and are part of the TRE pioneer group with our neighbours in Hampshire. It will be interesting if they prescribe the ‘how’ to us or give us the freedom to innovate and continue to make dynamic entrepreneurial decisions locally.”

“It’s a very welcome step in the right direction, especially with the adoption of many of recommendations from the Goldacre report,” added David Walliker, Chief Digital and Partnerships Officer (CDPO) at Oxford University Hospitals NHS Foundation Trust.

“It answers the tricky questions about data architecture – and in doing so, it sets out a clearly achievable and importantly a deliverable goal of unlocking the NHS data and the benefits this will translate too.”

Walliker did question some of the timelines, saying “there’s an awful lot of commitments to deliver in six months.”

The DHSC said it will follow up the launch of the data strategy with the publication of a digital health and care plan, which will set out a delivery plan for digital transformation across healthcare.