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Public trust is key to sharing health data successfully, says Fiona Caldicott

Sharing healthcare data could deliver better care for patients, but people must be allowed to assess the benefits and risks themselves, says Caldicott

The NHS has to explain the benefits and risks of sharing anonymised patient data to the public in a transparent way, Fiona Caldicott has said.

Speaking at an evidence session on big data in the government’s science and technology committee, Caldicott, who is working on guidance on how to word a new model of consent and opt-outs to be used by the Care.data programme, said that both clinicians and patients need to be properly informed on the benefits of sharing data.  

“A crucial issue is how we explain to the public what health data is used, for both in their care but also in the interest more widely,” she said. “Building trust in the aftermath of Care.data is a key issue and we need to listen to the public much more than we have yet.”

The controversial Care.data programme, which aimed to extract anonymised patient datasets from GP records to a central database held by the Health and Social Care Information Centre, caused uproar among the public and clinicians, mainly due to lack of information about both benefits and what would happen to the data.

The programme, which was put on hold several times, was re-launched in June 2015, but the four pathfinder sites were asked to pause the extraction work in September as health secretary Jeremy Hunt asked Caldicott to develop a meaningful consent model.

Caldicott said that “quite a lot of work” is needed to get the professionals on board with sharing data, both as part of the Care.data programme, but also more widely in the NHS.

She added that with the initial launch of Care.data, GPs were being asked to do something that would affect their relationships with patients, and felt they didn’t have the support to do that.

“Part of the problem with Care.data was that there wasn’t enough listening to it,” said Caldicott.

Anonymised clinical data is already being shared to find advances in medicine, and work has begun to enable more personalised care.

John Williams, director of the health informatics unit at the Royal College of Physicians, told the committee that stratified medicine leading to personalised medicine is going to be game-changer and will lead to clinicians being able to identify the right treatment for a patient much quicker.

He also warned that safeguards need to be in place to ensure the data doesn’t end up in the wrong hands.

“The use of healthcare data sets needs to be rigorously policed and safe guarded. The uses of the data sets need to be monitored,” said Williams.

“If there are health datasets that linked with datasets from other sources, that should happen either with approval from an appropriate body or have consequences.”

However, Williams also argued that the new European Union Data Protection Regulation would make it more difficult to use data for research. “The level of consent that’s required makes it impossible to do research,” he said.

The Care Quality Commission is currently undertaking a review of standards of data security across the NHS, which will be completed by January 2016. Caldicott, whose position as national data guardian for health and care has been put on a statutory footing, will contribute to the review.  

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Here's a radical idea: how about asking people for their consent to share their data? And stop using the word anonymous when data has to be identifiable in order for it to be linked.
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First point:

There is no such thing as anonymised data. Every study to date has found that anonymised data can be traced back to the person it applies to

Second point:
If this is so good and worthy then make it opt-in and not opt-out, and if we say no then we mean no forever
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