New strategy to harness health and social care data will save lives, government says

The government’s strategy will make it easier for researchers to access the data they need to develop life-changing treatments

14th June 2022 about a 3 minute read
“We will improve trust in data, which is the currency that data-driven technologies need to function. We will work with the public, including people working in health and care, to develop a new pact on data, which will set out how we will use health and care data, and what the public has the right to expect." Sajid Javid, health and social care secretary

A new data strategy for health and social care will help improve outcomes for millions of patients, the government has said.

The strategy, originally published in draft form in June 2021, has now been published in full. Entitled Data Saves Lives: Reshaping Health and Social Care with Data, it focuses on seven broad commitments:

  • Improving trust in the health and care systems’ 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

In a foreword to the document, Sajid Javid, health and social care secretary, writes that it won’t be possible to deliver change “unless we embrace the digital revolution and the opportunities that data-driven technologies provide.”

Launching the strategy at London Tech Week’s HealthTech Summit this week, Javid said: “We will improve trust in data, which is the currency that data-driven technologies need to function.

“We will work with the public, including people working in health and care, to develop a new pact on data, which will set out how we will use health and care data, and what the public has the right to expect.

“This will include the ability to opt out of sharing data. Because although we know that most people want their data to be used for good, we will make the opt-out system simpler and more transparent.”

The strategy includes a set of data architecture principles, including tackling the environmental costs of data storage by using cloud-based storage wherever possible. This will support the NHS’s commitment to tackling climate change and reaching net zero by 2040 for the emissions it controls directly, the document says.

Closing the digital divide between health and social care

Javid said that social care “lags behind the NHS when it comes to digital transformation.” This is something he plans to change: “Our social care system is home to some of our most vulnerable in our society, and so the opportunities on offer are even greater. This strategy shows our determination to close the digital divide that exists between the NHS and social care.”

One significant commitment in the strategy is to make Trusted Research Environments (TREs) the default for NHS and adult social care organisations. These will provide secure access to de-identified data for research, so that data linked to an individual will never leave a secure server and can only be used for agreed research purposes. This expansion in the use of TREs was a core recommendation of the Goldacre Review, published in April.

Ben Goldacre, author of the review and director of the Bennett Institute at the University of Oxford, described the new strategy as “momentous” because it reaches beyond aphorisms and gets into crucial technical detail.” He said that the move to use TREs was “historic”, adding: “The small number of secure platforms described in this document will finally unlock the vast potential in all patient data for research and for improving NHS care. Done right, they will address the privacy concerns of the past and drive faster, more reliable, more secure and more efficient use of data, from more teams than ever before.”

FCC Insight

It’s good to see that the new strategy takes into account some of the recommendations we and the National Care Forum made in our joint response to the first draft last year.

We are pleased in particular with progress on:

  • Climate. This wasn’t covered in the first draft, but is included now. A mention is not a defined plan of action for emissions reductions, however.
  • Social Care. As well as a specific section for social care it is good to see more joined-up health and care throughout the strategy, but more is still needed for continuity of care and record maintenance over the long term.
  • An honest admission about the failings in the GP data opt-out, and the consequences for public trust and missed opportunities as a result.
  • An approach to pandemic-associated control of patient information (COPI) notices.

We believe that work is still needed on:

  • A more complete view of data and technology as part of a joined up overall picture for care delivery and technology development together. For example, there is no reference to Internet of Things (IoT) sensors in automated data capture
  • Wider digital/infrastructure plans are not always aligned. For example, commitment 304 states that by March 2024 at least 80% of social care providers will have a digitised care record in place that can be connected to a shared care record. Yet in 2021 there were 7,000 care homes without connectivity, more than 40% of the total. Without improved infrastructure in place, these targets will be missed. It isn’t clear how this is going to be achieved with such a gap in current digital connectivity. Is it purely DHSC’s problem, or is DCMS collaborating?
  • More in-depth climate impact work related to data is needed – assessments of current projects as well as future. If all the strategy is completed as stated, what is the climate impact, how can it be reduced and how will DHSC and the NHS achieve NetZero?
  • Tracking and communicating key milestones and progress. There are a lot of commitments, and measurement will be crucial to progress.