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New data strategy for England aims to rebuild public trust

BMJ 2022; 377 doi: https://doi.org/10.1136/bmj.o1455 (Published 14 June 2022) Cite this as: BMJ 2022;377:o1455
  1. Jacqui Wise
  1. Kent

The government has set out its new data strategy for health and social care in England and put “public trust and confidence front and centre” after widespread concern over consent and confidentiality stalled the launch of the GP data collection scheme last year.

Data Saves Lives: Reshaping Health and Social Care with Data1 sets out far stronger safeguards, with researchers only able to access data through trusted research environments (TREs). This means that data linked to an individual will never leave a secure server and can only be used for agreed research purposes. All access to the data and analysis will be monitored to reduce the risk of data breaches or other misuse.

Patients will have greater access to and control over their data including by simplifying the opt out processes for data sharing and improving access to GP records. The public will also be consulted on a new “data pact” which will set out how the healthcare system will use patient data, and what the public has the right to expect.

Last summer 1.5 million people opted out of the planned General Practice Data for Planning and Research (GPDPR) programme after serious concerns were raised about privacy risks. NHS Digital was forced to delay the scheme until tougher safeguards were put in place.2345 The new data strategy says the GPDPR programme will be a “flagship example of a service where data will only be accessible via a secure data environment.”

The strategy was published in draft format in June 2021. In April this year Ben Goldacre published a report containing 185 recommendations on improving the use of health data in England. One of its main recommendations was the development of TREs in order to protect patient data.6

“Untapped power”

Commenting on the government’s new strategy, Goldacre, director of the Bennett Institute at the University of Oxford, said, “NHS data have phenomenal untapped power. This is a momentous document, because it reaches beyond aphorisms and gets into crucial technical detail.

“The move to use TREs, in particular, is historic. TREs earn public trust by 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 report says, “We cannot take the trust of the public for granted. In the summer of 2021 we made a mistake and did not do enough to explain the improvements needed to the way we collect general practice data.” It adds, “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.”

Launching the strategy at a HealthTech summit in London, health and social care secretary Sajid 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 it and what the public has the right to expect.”

Enhancing the NHS app

The strategy sets an ambition for the NHS app to be a “one stop shop for health needs” with a target of 75% of the adult population registered to use it by March 2023. Patients will have access to their GP records through the app by November 2022. Further improvements, including being able more easily to request historic information including diagnosis, blood test results, and immunisations will be made available by December 2023.

The detailed strategy also outlines the importance of giving patient facing health staff up to date information. It acknowledges that staff spend large amounts of time collecting data. A national information governance transformation plan, focusing on practical data sharing situations and tackling training for patient facing staff, will be developed by December 2022.

Another commitment is to ensure that health and social care data are integrated in order to speed up discharge from hospital. Currently only 45% of social care providers use a digital social care record and the strategy sets a target of 80% by March 2024, with £25m made available to make this happen.

NHS Digital chief executive Simon Bolton said, “Better access to data will be vital for the NHS recovery and patient trust and confidence must be central to this. We are committed to giving patients more control and increasing transparency over how data are used to improve health and care services.”

Martin Landray, professor of medicine and epidemiology, University of Oxford, and co-lead of the Recovery trial, said, “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 planning and conducting the 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.”

But Charles Tallack, director of data analytics at the Health Foundation, said, “While the strategy represents an important step in the right direction, its impact will depend on whether and how the commitments are implemented in the coming years. It will also be important for the public, patients, service users, and staff across the system to be engaged in implementation—to build and maintain confidence in the use of data. And the strategy must be properly resourced, to ensure its ambition can be realised.”

References

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