Data saves lives: building trust in NHS data use

Philippa Brice

15 June 2022

Blog

The UK government Department of Health and Social Care has released the newly updated version of the Data saves lives: reshaping health and care with data strategy for the NHS.

First released in draft form in June 2021, and updated in February 2022, this final version of the policy paper follows the important Goldacre Review into the use of health data for research published in April 2022. It also includes concrete, time-specific commitments for action.

How can data reshape health and care?

Introducing the new strategy, Health and Social Care Secretary Sajid Javid emphasised the driver for the planned changes, the urgent need for health and care system reform in order to meet ever-growing needs. The optimal use of data-driven technologies (or ‘embracing the digital revolution’) has been correctly identified as essential for change, and the Minister noted that the strategy would ensure data will be used ‘to bring benefits to all parts of health and social care – from patients and care users to staff on the frontline and pioneers driving the most cutting-edge research’.

The strategy seeks to ensure that both the technical infrastructure for NHS data and public trust in how that data is used are improved, and that data can be used to the best effect, specifically for:

  1. Direct care of individuals
  2. Improving population health through targeted services
  3. Planning and improvement of services
  4. Research and innovation

Importantly, using data is an imperative for the new Integrated Care System (ICS) structures of the NHS in England, regional partnerships between health and care commissioners and providers, local authorities and others. The ICSs are charged with not only delivering health and care services for their populations, but also improving efficiency, reducing health inequalities, and ‘supporting broader social and economic development’ – a weighty task, and definitely one that will require making the best of data across partner organisations.

It is asserted that the previously announced merger of NHS Digital, NHS England and NHS Improvement will also underpin the better and more trusted use of data; it is not clear how, but then, it was never very clear from the outside how these agencies (or the now defunct NHSX, already subsumed into NHSE) interacted.

A welcome focus on improving public trust and confidence

Perhaps most significantly, the final version of the strategy firmly acknowledges the need for substantive action to improve public confidence in how the NHS uses data, including referring with highly unusual (but extremely welcome) candour to public concerns over primary care ‘data-scraping’: ‘we cannot take the trust of the public for granted. In the summer of 2021, we made a mistake and did not do enough to explain the improvements needed to the way we collect general practice data…we also did not listen and engage well enough’.

This, it seems, is an NHS that has genuinely, finally, learned from previous mistakes with regard to public trust; the strategy says it will ensure trust is supported by keeping data safe and secure; being open about how it is used; giving greater public access to personal data and influence over how data is uses, and ensuring fair terms from data partnerships.

This is welcome recognition, and echoes the PHG Foundation recommendations made in our recent response to the House of Commons Health and Care Committee Inquiry on NHS Digital Transformation. With respect to public trust, we noted that:

‘patient and public confidence is delicate. Communicating benefits and providing assurances is unlikely to assuage all concerns. We believe the time is right for a genuine and broad engagement with the public around the use of health data, in terms of the incredible potential of such data as well as the risks’

We also cautioned that this was not an easy task and would require the dedication of significant resources to achieve it.

Data partnerships, opt-outs and access

It is recognised by the strategy that one of the causes of mistrust about the use of health data arises from commercial access to personal information. With this in mind, there are steps to make sure that data partnerships between the NHS and other partners – including but not limited to life science research companies are ‘safe, ethical,  lawful and transparent’.

In fact, the earlier Life Sciences Sector Deal had already set out principles – endorsed by the new data strategy – about the use of NHS data including the requirement that it must have ‘an explicit aim to improve the health, welfare or care of patients in the NHS, or operation of the NHS’ and not impair or undermine the operation of the NHS. This was perhaps not widely recognised by those with concerns about commercial partners, another failure of previous communication and engagement efforts that the new data strategy clearly aims to address.

The strategy commits to providing fresh guidance for NHS data partnerships and new commercial principles to ensure principles are adhered to, by the end of 2023. Similarly, there will be new guidance on meaningful public and patient engagement over the use of health data, to develop standards that will apply to all research organisations, not merely commercial entities.

The strategy has clear ambitions to boost the use of the NHS website and NHS App, aiming to have 75% of the adult population registered to use these channels by March 2024 and the public able to access GP records and request information such as test results and vaccination records by the end of 2023. There is also a weighty commitment to roll out shared care records and enable public access by the end of 2025.

Secure data environments

The other side of the coin from candid, two-way conversations between the NHS partners and stakeholders about how data is collected, stored, and shared, is the security of the systems for these actions. The new strategy says there will be greater use of new privacy-enhancing technologies (including federated analytics, encryption and synthetic data) to protect personal information, and new secure data environments (which include trusted research environments) as the default route for access to health and care information for research and analysis.  Specifically, by the end of the year, full technical specifications and accreditation schemes for secure data environments will be released along with an implementation roadmap, policy and public guidance.

This, too, is welcome, and echoes recent PHG Foundation recommendations that ‘the most pressing action to ensure consistency, clarity and confidence in how data is collected, used and protected within the NHS is in ensuring that proper guidance is in place.’

Towards a new data pact?

Overall, the strategy says it will develop a new pact or charter with the public to ‘reset the conversation on health data’ and agree clear, shared expectations including a transparency statement, new information governance frameworks and guidance, a clear ‘opt-out’ choice for citizens, and a plan for maintaining and measuring public trust including standards for public engagement – all by the end of 2022.

A public dialogue will support development of this data pact, and members of the public are asked to sign up to express their interest in involvement – although the NHSX link provided does not offer a clear route for doing this, instead setting out information about the strategy and offers an email address for contact. However, hopefully this is just the start of a journey towards more genuine, large-scale and effective engagement efforts.

Other aspects of the new data strategy are explored in separate blogs

Genomics and policy newsletter

Sign up