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Latest on what lies ahead for data in health and social care

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By Darryn Hale and Sophie Devlin


Published 21 June 2022


The final version of the Department of Health and Social Care’s data strategy - Data saves lives: reshaping health and social care with data - has now landed, which follows on from the draft version published for consultation last year.

As we commented at the time, the proposals set out within the strategy are extensive, ambitious, and with a strong focus on sharing data across the system to support a more integrated and technology-driven health and social care landscape for the future. This is all underpinned by over 100 commitments from the DHSC setting out how it plans to turn this vision into a reality.

In this briefing, we look at the headline points.

Key messages

At the heart of the strategy is a drive to embrace the opportunities that data-driven technologies provide. However, there is an inevitable tension between the benefits of sharing information to improve care and the need to protect people’s privacy, and this difficult balance is a consistent theme throughout. The related challenge of convincing people that the health and care system is a ‘trustworthy data custodian’ is much more prominent in the final version of the strategy than it was in the draft; in particular, the first section of the strategy is now dedicated to ideas for improving trust in the health and care system’s use of data.

Overall, however, the vision set out in the strategy is very similar to the draft version, with two of the key pillars being the push towards each of us having a digital shared care record encompassing all our health and social care interactions and the establishment of secure data environments to support research and innovation.

What changes can we expect?

The proposals for change set out in the data strategy are many and wide-ranging so we have not attempted to summarise all of them in this alert, but instead focus on the headline changes for particular groups. They are:

People using services - there is an emphasis on people being more easily able to access their own data as well as having all information about their health and social care brought together in a shared care record, with a view to improving and further integrating the manner in which direct care is delivered. Development of the NHS App also features significantly in the plans, with a target to register 75% of adults to use it, with content tailored to them, by March 2024. In a marked change from the draft version, however, there is now less of an emphasis on assertions about people being happy to have their information shared for the wider good and instead more of a focus on putting public trust and confidence ‘front and centre’. One of the associated key commitments is to establish a ‘data pact’, setting out how people’s health and care data will be used and what the public has a right to expect.

Relatedly, the strategy now highlights the need to ensure there is a simpler ‘opt-out’ system in place that provides greater clarity and choice to patients about how their data is used (and, crucially, is not to be used). There is also now a greater focus on addressing health inequalities, highlighting the need to ensure that the digital push does not exacerbate inequalities and is part of a ‘multi-channel’ offering, including face-to-face support for those who need it. In another change from the draft, some of the more technologically ambitious solutions previously put forward such as creating ‘a network of decentralized personal data stores’ do not feature in the final version.

Frontline staff - the focus here is on ensuring that health and social care professionals have easy access to all the information they need, when they need it, to provide the best possible care. On this issue, the strategy highlights the progress already made in terms of all integrated care systems now having a basic shared care record in place (between GP practices and NHS Trusts), but the goal is to expand this to achieve comprehensive record sharing by the end of 2024, so that ‘every person and the health and care professionals involved in their care can draw on information from, or put information into, the same shared care record in a safe and straightforward way”. There is a strong focus in this context on the drive to improve the position on digital records in social care, with a commitment to ensuring that, by March 2024, at least 80% of social care providers will have a digitised care record that can be connected to a shared care record.

Policy-makers/leaders - with the changes to be introduced by the Health and Care Act now almost upon us and an expectation that integrated care systems will drive data-led decision-making for the benefit of their populations, ensuring the availability of accurate data throughout the system will be crucially important. A key element of this will be developing the right technical infrastructure, which the strategy sets out plans for achieving and includes a commitment to introduce a power for the Secretary of State to mandate standards for how information is collected and stored, so that it flows through the system in a usable way. The Act also includes a new statutory power enabling health and social care organisations to require anonymous data from each other and from commissioned private providers, exercisable where access to such information would assist that particular organisation in delivering their functions.

Researchers - the strategy aims to empower researchers with the data they need to develop life-changing treatments, diagnostics and models of care. Key to the plans for achieving this will be to establish secure data environments as the default route for health and social care organisations to provide access to their de-identified data for research and analysis, to be supported by the publication of guidelines and an accreditation framework for use of such environments. 

Innovators - with the ambition to establish data as the cornerstone of the UK’s ‘large and vibrant’ health and care tech sector, the strategy underlines the importance of supporting innovators to develop new solutions quickly and safely by ensuring they have clarity over what data they can access and how it can be used. As well as highlighting progress already made with the NHS ‘AI lab’ and the AI in health and care awards, the strategy commits to the development of a unified standard for the efficacy and safety testing of AI solutions by the end of next year.

What next?

The DHSC says it will now work to deliver against the commitments made in this strategy.

The summary of feedback DHSC received on the draft version explains that the strategy has purposefully been kept as a high level document to set vision and direction, but that individual work streams are mapping their interim steps and will publish ‘roadmaps’ as needed.

As the operational detail on implementation emerges, DHSC says it will report on progress and will involve the public in this through its engagement programmes, including via the ‘data saves lives’ online hub