How to build trust in data-driven technologies

How can the new strategy, launched by the government, drive transformation in health and care?

CREDIT: This is an edited version of an article that originally appeared on Digital Health

The government strategy, Data Saves Lives: Reshaping Health and Social Care with Data, was originally published in draft form in June 2021, and the full document was published in June this year.  It focuses on seven principles to harness the data-driven power and innovation seen during the pandemic to drive transformation. These are:

• 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.

The idea of improving access to medical records for patients through the NHS app was first seen in the draft data strategy. Health secretary at the time, Matt Hancock, highlighted plans for data partnerships which would allow the NHS and industry to create tools and insights from data, and this development has been carried forward into the full strategy.

 “The NHS is determined to bring the benefits of data to improve care and outcomes for patients and drive better, more efficient, services,” said Tim Ferris, national director of transformation at NHS England and NHS Improvement. “This strategy builds on the excellent progress made during the pandemic, and paves the way to a future NHS that routinely harnesses the power of data to save lives and enables innovative research into new treatments.”

A big move to create trusted research environments

In addition, another major part of the new strategy is that secure data environments will become the default for NHS and adult social care organisations to provide access to de-identified data for research, meaning that data linked to an individual will never leave a secure server and can only be used for agreed research purposes.

Following a £200m investment, trusted research environments (TREs) will be established to better enable researchers to securely access linked NHS data, while maintaining the highest levels of privacy and security. This comes after a review led by Professor Ben Goldacre, a Bennett professor of evidence-based medicine at the University of Oxford, which looked into how health data for research and analysis can be used efficiently. In his review, he recommended that TREs become ‘the norm’ and later told the Science and Technology Committee that they will mitigate data risks and “earn public trust”.

“NHS data has phenomenal untapped power,” Professor Goldacre said in response to the new strategy and the move to the use of TREs. “This is a momentous document because it reaches beyond aphorisms and gets into crucial technical detail. The move to use trusted research environments, in particular, is historic. TREs earn public trust by provably protecting patients’ privacy, and by sharing detailed transparent audits of all data usage. They also drive efficiency, because all users working with the same datasets can use common tools for data curation and analysis,” he explained. 

“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.”

The data strategy is due to be followed by the digital health and care plan – which is a delivery plan for digital transformation across healthcare set out by the government.