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NHSX emphasises need for ethical patient data access

The health service's digital unit welcomed the launch of Health Data Research hubs, but stressed that it will control the design of research collaborations

NHSX has stressed the need for ethical frameworks and guidance around patient data access as new data hubs were launched to focus on research into diseases such as cancer, Crohn’s disease and asthma.

The health service’s digital unit welcomed the announcement of the seven hubs led by Health Data Research UK on 13 September, which will begin operations in October and will link up different types of health data to trial new treatments and support improvements in care.

The hubs, which are also expected to drive economic growth through greater research activity, are part of a four-year £37m investment from the UK Government Industrial Strategy Challenge Fund, announced in November 2017 and led by UK Research and Innovation.

One of the key parts of the discourse at the launch was that the hubs would ensure data was kept safe and secure, with public involvement in how the data is used. In a blog post, NHSX chief digital officer Tara Donnelly emphasised the importance of ethical frameworks for such experiments.

“It is right that we manage access to any NHS information very carefully. It is time for the NHS to actively own and drive this agenda,” said Donnelly.

“We need to control the design of research collaborations to make sure that benefits are returned to the NHS and the UK public,” she said.

“And we need to earn the public’s trust that we can do this well. That involves including patients and the public in decisions about how data will be used and accessed.”

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Donnelly then stressed that NHSX has been developing ethical frameworks and guidance for work involving patient data. She noted that prior to announcing plans to launch an artificial intelligence lab, the digital unit had already published a code of conduct with expectations on how to work with data-driven technologies in a patient data context.

The digital unit will provide specialist commercial and legal advice to NHS organisations entering data agreements, Donnelly noted, adding that the NHSX Centre of Expertise will develop standard contracts and guidance.

“NHS and care organisations have an obligation to protect patient data, but in my view, they also have the obligation to make best use of it,” she said. “Collaborations need to benefit everyone involved – patient lives are at stake.”

Donnelly also mentioned that “citizen juries” are currently taking place to debate the matter of how patient data should be used what constitutes a fair partnership between the NHS and researchers, charities and industry on uses of patient and operational data from the NHS.

“By testing different commercial models against the principles on which our citizens are not prepared to compromise, we hope to reach a consensus on what good looks like and how best we achieve the promised benefits.”

In July, a programme was launched by Public Health England and NHSX with the aim to usher in a “new era of evidence-based self-care”, with patients increasingly expected to allow access to their personal data.

In addition, the cross-departmental collaboration will also explore the development of “models of dynamic, informed consent”, to enable individuals to choose how and when they want to share their personal information for the purposes of personalised predictive healthcare services.

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