The UK’s new ‘Data Saves Lives’ NHS data strategy has been hailed as “very good indeed” by an influential review author, as the government promises greater consultation on use of health data.
The new policy paper details approaches for how patients, the NHS and researchers will be able to access data, and commits to making use of “secure data environments” and giving patients more power over their data, including easier opt-out mechanisms. The paper also says £25 million will be spent on digitisation of social care, with 80% of social care providers to have digitised records by 2024.
In addition, the NHS data strategy makes a commitment to open code: “Public services are built with public money, and so the code they are based on should be made available across the health and care system, and those working with it, to reuse and build on.”
Professor Ben Goldacre, who chaired the eponymous review into the use of data in healthcare which was published in April, welcomed the new Data Saves Lives policy. He specifically cited the use of “trusted research environments” (a subset of the “secure data environments” cited in the policy) by default and the use of open code.
Jess Morley lead researcher on the Goldacre Review and director of policy at the Bennett Institute for Applied Data Science, said in a blog post: “It is an excellent document that has progressed hugely since the draft was published last year, showing true commitment to listening to public and professional feedback, and – crucially from our perspective – the findings and recommendations of the Goldacre Review.”
She added on Twitter: “We must congratulate the team involved in working on the document. It always takes a monumental effort to get to this stage, and this document shows a rare willingness to move beyond aphorisms and get into technical detail.
“It does not shy away from complex questions about data architecture. In doing so, it finally sets out – not only a vision – but a clearly achievable and readily deliverable roadmap for unlocking the phenomenal potential of NHS data,” she said.
7 principles of NHS data strategy
The NHS data strategy paper sets out seven principles:
- 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
Under each of these the policy makes various commitments, including by December 2022: the implementation of secure data environments; establish a data pact and transparency statement on how health data is used; develop a national information governance transformation plan, focused on data-sharing.
The NHS data strategy also promises to provide patient access to their latest health information via the NHS app by November 2022, and to request coded information such as diagnoses and test results by December 2023. It also set a target of having 75% of the adult population registered for the NHS app by March 2024.
The seventh principle – developing the right technical infrastructure – includes commitments to data quality, discoverability and consistency. The government committed to agreeing a target data architecture, publishing the NHS Cloud Strategy, and mapping technical debt, by September 2022.
DHSC will also establish four exemplar sites and develop a data orchestration layer and metadata catalogue by December 2022.
Health service ‘made a mistake’ with data sharing
When discussing the importance of public trust, the NHS data strategy acknowledges the health service “made a mistake” in 2021, when it planned to opt in all patients to data sharing, without explaining the move, or listening to concerns. This resulted in more than 1.2 million data opt-outs in a single month alone, as patients rebelled against the move.
“Not only did we insufficiently explain, we also did not listen and engage well enough. This led to confusion and anxiety, and created a perception that we were willing to press ahead regardless. This had the unfortunate consequence of leading to an increase in the rate of individuals opting out of sharing their data,” said the paper.
The paper emphasised patients would always retain the right to opt out – but made the point that the more opt-outs there are, the poorer the quality of the data.
“The data we talk about is not an abstract thing: there is an individual, a person, a name behind each piece of data. That demands the highest level of confidence. It is their data that we hold in trust and, in return, promise to use safely to provide high-quality care, help improve our NHS and adult social care, develop new treatments, and, as a result, save lives,” said the NHS data strategy paper.
Morley described the NHS data strategy as a “momentous achievement”, and said that while there are gaps in the new strategy – such as a lack of reference to data curation or modernising the NHS analytics workforce – the team behind the policy has made “very welcome and clear commitments” to engage with other parts of the system.
“Similarly, commitments on paper do not always translate into actions in the real-world and, as always with Government strategies, the ‘proof will be in the pudding.’ However, this remains the clearest articulation of how the Government intends to ensure data saves lives in a secure, efficient, and modern way, and this in itself should be celebrated; it is a significant achievement,” said Morley.