Health data strategy to exorcise ghosts of GPDPR

NHS patients are to get greater access to their GP data records through the NHS App, and will be given more power over how their personally identifiable information (PII) is used by the health service – including a simplified opt-out process – under new proposals published today by the Department for Health and Social Care (DHSC).

The new data in health strategy, Data saves lives: reshaping health and social care with data, is being formally launched by health secretary Sajid Javid at a London Tech Week health technology summit.

At its core, the strategy centres seven principles to harness the “data-driven power and innovation” seen during the Covid-19 pandemic to drive transformation in the health and care sector, while at the same time ensuring that patient data is protected within a secure, privacy-preserving system that benefits both patients and researchers.

“We are embarking on a radical programme of reform that will make sure the NHS is set up to meet the challenges of 2048 – not 1948, when it was first established,” said Javid.

“Earlier this year, I set out a range of stretching targets for digital transformation in health and care, and we’re making great progress.

“This landmark document will look at how we can build on this momentum and apply the lessons to challenges ahead of us, including tackling the Covid backlog and making the reforms that are vital to the future of health and care.

“It shows how we will use the power of data to bring benefits to all parts of health and social care.”

Published almost a year after a storm of controversy forced the government to back down from its proposed General Practice Data for Planning and Research (GPDPR) data scrape, and two months after the publication of the Goldacre Review into how the efficient use of health data for research and analysis can benefit patients and the health sector, the government will be hoping these new proposals will lay to rest some of the ghosts of its previous attempt.

The core seven principles set out in the strategy are:

• To improve trust in how the health and care system uses data.
• To give health and care professionals the information they need to provide the best care.
• To improve data for adult social care.
• To support local decision-makers with data.
• To empower researchers with data to develop life-changing treatments and diagnostics.
• To work alongside partners to develop innovations that improve health and care.
• To develop the right technical infrastructure to accomplish this.

The previous strategy foundered over an abject failure to secure patient confidence and trust – and, in a great many cases, basic awareness – of how their data was going to be used. To address this critical point, the government now proposes to make so-called secure research environments (SREs) the default method for how NHS and social care organisations provide research bodies with access to de-identified patient data.

In layman’s terms, this means data linked to an individual patient will be held on a secure server. It can be checked out by researchers any time they like, but it can never leave the server and will only be permitted to be used for agreed purposes.

A further £200m investment will support the establishment of trusted research environments (TREs) – a form of SRE – for researchers to access linked NHS data, while maintaining that data’s privacy, integrity and security.

The government believes this will allow the NHS to develop and deliver cutting-edge, life-saving treatments to the point of need much more quickly, and facilitate more diverse, inclusive research to tackle some of the health inequalities that, sadly, remain entrenched in the NHS.

In terms of guaranteeing patients’ ability to opt out of having their data included, the strategy promises to simplify the opt-out process, while at the same time improving patient access to their GP records through a major update to the NHS App, which the government says will be completed by November 2022. After that, it plans to make further improvements to the app, including adding the ability to more easily request historical data such as diagnoses, test results and vaccine records.

A new data pact will also be set out to explain how the NHS and social care bodies use patient data, and what people have the right to expect. A consultation to this effect will open shortly.

“We will improve trust in data, which is the currency that data-driven technologies need to function,” said Javid.

“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 most people want their data to be used for good, we will make the opt-out system simpler and more transparent.”

Ben Goldacre, director of the University of Oxford’s Bennett Institute and author of the recent review – who recently told a select committee he had exercised his right to opt out of the previous GPDPR scheme, citing privacy concerns – said the data held within the NHS held “phenomenal untapped power”.

“This is a momentous document, because it reaches beyond aphorisms and gets into crucial technical detail,” said Goldacre. “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.

“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.”

Martin Landray, professor of medicine and epidemiology at the University of Oxford and co-lead of the Recovery trial, said: “Having information on the right patients, at the right time, and available to the right people is essential for any high-quality health and social care system. As a doctor, I see this need every time I meet a patient in one of my clinics. And as a researcher, I know just how important this is in our quest to understand the causes and consequences of ill-health and how to improve them – whether that be through studying disparities in health and health care or, in my own area, running clinical trials to find out which treatments deliver true benefits for patients.

 “As we look ahead, the lessons from trials such as Recovery are going to be just as important for other major causes of ill-health – including severe influenza, heart disease, common cancer, depression and dementia.

“Careful use of health data, not just from hospitals, but also from across the primary and social care system, is going to be crucial for the important task of planning and conducting clinical trials that drive improvements for those major burdens for patients, their families, and the NHS. The Data saves lives report is an important step in that direction.”

With better use of data being core to the government’s mission to integrate health and social care, the strategy also highlights how integrated care records will supposedly enable smoother transitions between NHS and social care settings, including quicker discharge from hospitals to free up needed beds.

According to government statistics, only 45% of social care providers currently use digital social care records, and almost a quarter of staff working in a care home setting cannot generally access the internet at work. The strategy sets out plans to change this, and reiterates an already-held ambition to have digitised care records in place in 80% of social care settings by March 2024.

In support of this, the government proposes to make £25m available in 2022 and 2023 to scale up investment in, and implementation of, digitised social care in England, including integrated care systems and digital records.

“We must be open and honest about the fact that social care lags behind the NHS when it comes to digital transformation,” said Javid.

“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.”