Health data strategy to exorcise GDPR ghosts

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NHS patients should get better access to their GP data records through the NHS app and will have more power over how their personally identifiable information (PII) is used by the health service – including a process Simplified opt-out – under new proposals released today by the Department of Health and Human Services (DHSC).

The new health data strategy, Data saves lives: reshaping health and social care with data, is officially launched by Health Secretary Sajid Javid at a London Tech Week Health Tech Summit.

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

“We are embarking on a radical program of reform that will ensure the NHS is set up to meet the challenges of 2048 – not 1948, when it was created,” said Javid.

“Earlier this year, I set out a set of ambitious goals for the digital transformation of health and care, and we are making great progress.

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

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

Released nearly a year after a storm of controversy forced the government to scrap its proposal to collect General Practice Data for Planning and Research (GPDPR), and two months after the release of the Goldacre review on how the effective use of health data for research and analysis can benefit patients and the health sector, the government hopes these new proposals will remove some of the ghosts of its previous attempt.

The seven core principles set out in the strategy are:

  • Improve trust in how the health and care system uses data.
  • Give health and care professionals the information they need to provide the best care.
  • Improving adult social care data.
  • Support local decision-makers with data.
  • Empowering researchers to develop life-changing treatments and diagnostics.
  • Work with partners to develop innovations that improve health and care.
  • Develop the right technical infrastructure to achieve this.

The previous strategy faltered on an abject failure to secure patient trust and confidence – and, in many cases, basic knowledge – of how their data was going to be used. To address this critical point, the government is now proposing to make Secure Research Environments (SREs) the default method for how the NHS and social care organizations provide research organizations with access to anonymised patient data.

In simple terms, this means that data related to an individual patient will be kept on a secure server. It can be viewed by researchers at any time, but it can never leave the server and can only be used for agreed purposes.

An additional investment of £200 million will support the establishment of Trusted Research Environments (TRE) – a form of SRE – enabling researchers to access linked NHS data, while maintaining the confidentiality, integrity and the security of this data.

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

In terms of ensuring patients’ ability to opt out of their data inclusion, the strategy promises to simplify the opt-out process, while 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 request historical data more easily such as diagnoses, test results and vaccine records.

A new data pact will also be established to explain how the NHS and social care bodies use patient data and what people can expect. A consultation to this effect will open soon.

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

“We will work with the public, including people working in health and care, to develop a new data pact, which will define how we will use health and care data, and what the public is entitled to expect.

“This will include the ability to opt out of sharing data. Because while we know most people want their data to be used wisely, we’re going to make the opt-out system simpler and more transparent.

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

“This is a momentous document because it goes beyond aphorisms and goes into crucial technical details,” Goldacre said. “The decision to use trusted search environments, in particular, is historic.

“TREs earn public trust by provably protecting patient privacy and 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 paper will finally unlock the vast potential of all patient data for research and improving NHS care. Done well, they will address the privacy issues of the past and enable a faster, more reliable, more secure and more efficient use of data, by 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 about the right patients, at the right time and available to the right people is essential for any health and social care system. As a doctor, I see this need every time I see a patient in one of my clinics. And as a researcher, I know how important this is in our quest to understand the causes and consequences of ill health and how to improve them – whether by studying health and health care disparities or, in my own field, running clinical trials to find out what treatments bring real benefits to patients.

“As we look to the future, lessons learned from trials like Recovery are going to be equally important for other major causes of poor health, including severe flu, heart disease, common cancer, depression and Madness.

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

With better use of data being at the heart of the government’s mission to integrate health and social care, the strategy also outlines how integrated care records will enable smoother transitions between the NHS and social care settings, including faster discharge from hospitals to free up the necessary beds.

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

In support of this, the government is proposing to make £25m available in 2022 and 2023 to increase investment and implementation of digitalized social care in England, including integrated care systems and digital records .

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

“Our welfare system is home to some of the most vulnerable members of our society, and so the opportunities offered are even greater. This strategy shows our determination to bridge the digital divide that exists between the NHS and social care.

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