Health Service Focus

Dealing with data safely

NHS England’s care.data initiative may have been put on hold for six months, but the issues surrounding the data sharing system rumble on. David Stevenson reports on how the topic was addressed at NHS Expo 2014.

The sharing of patient data must be done securely, safely and confidentially, according to an expert panel talking about
care.data during the Health and Care Innovation Expo 2014.

However, the panel, which featured Tim Kelsey, national director for patients and information at NHS England, also stated that there was a significant need for a data-driven NHS in the future to ensure better patient care and advances in medical learning.

Under the proposed care.data initiative, which was recently paused by NHS England for six months, it would be assumed that patients consent for their data to be passed on unless they explicitly opt out. This resulted in concern from patients, GPs and privacy groups, compounded by recent headlines about other sets of NHS data being passed on or sold.

“We’ve all learnt an enormous amount about public information and the real fundamental importance of this debate,” Kelsey said. “That is why I took the decision to give us another six months to properly understand why this is so important, so that for a safe, high-quality, data-driven NHS we can ensure everyone’s fears are ironed out.”

Delicate data balance

Dr Tony Calland, chairman of the BMA’s Medical Ethics Committee, argued that care.data is about balance. “In this case there are the benefits of medical confidentiality, something that has been with the medical profession since Hippocrates, and those of learning and teaching.”

He added that it is vitally important that the public trust in medical confidentiality is not eroded – otherwise the healthcare system will not be as full or rich as it is at present.

But Dr Calland noted that many media reports discussing care.data omit the words ‘anonymised’ or ‘pseudonymised’ when referring to patient data – giving the impression that everyone’s medical information will be passed on and redistributed to anyone who has a few thousand pounds to pay for it. “This is completely wrong; but it is a mindset and concept we must clarify to improve the situation, be it in the form of technology, pseudonymisation at source, greater regulation and oversight, whichever is the most efficient,” he said.

Sarah-Jane Marsh, chief executive of Birmingham Children’s Hospital, who spoke passionately about the benefits of data-sharing and how patient safety could trump the need for confidentiality, stated that the NHS must change the way it thinks about data.

“Security trumps patient safety every time. It is our duty to challenge this principle,” she noted. “We can’t just assess the risk of doing something; we must also assess the risks of not doing something.”

Tougher legislation

During the exhibition health secretary Jeremy Hunt said he has put forward a raft of privacy measures, including a statutory requirement that any patient’s opt-out will be respected. This will prevent the Health and Social Care Information Centre (HSCIC) – the body which will control the data – from sharing personal information where there is “not a clear health or care benefit for people”.

He also praised Tim Kelsey for campaigning to have the opt-out put in place for patients. “We are the first country in the world saying this, as we want to take the public with us so that the whole transparency revolution – which everyone believes in – works,” said Hunt. “Doing this will lead to much greater public awareness in terms of data security, which I will support with legislative changes. This will also help our country become one of the leading lights in developing far-reaching, advanced medical discoveries in
the future.”

Kelsey said the public debate on data-sharing should have been thrashed out years ago, especially because the NHS has been using patient data for so long to develop new treatments. “For example, over 45,000 people under the age of 75 have heart disease in this country and, thanks to people like Bruce Keogh, we know we are now saving more lives than ever before,” he said. But this was only possible through having access to patient data.

Rounding off the panel discussion, Roy Lilley, the journalist and commentator, said data has revolutionised the country’s attitude to care and helps keep people safe.

He said he hoped NHS England listens to the common sense of the British people with regards to data security and sharing. But, during the session, he did do a show of hands which revealed: “In this room, only five people have opted out from about 150.

“Let’s not blindly follow in the footsteps of what has gone before. I don’t want to do that, I want to know what’s gone before, what
works and what doesn’t work.  I want to learn the lessons. Data for change – it is up to you,” he concluded.

(Image: c. NHS Engalnd)

Public trust

NHE readers were presented with some of the arguments for and against the way care.data is set to work in the last edition of the magazine, with input from Sharmila Nebhrajani, chief executive of the Association of Medical Research Charities, and Nick Pickles of Big Brother Watch.

The subject was forced up the media (and social media) agenda on 25 February, when the Commons health committee held its first oral evidence session on care.data. Pickles and Nebhrajani both gave evidence, along with health minister Dr Dan Poulter,
Tim Kelsey, and the HSCIC’s Max Jones, among others.

This session was widely judged not to have gone well for the HSCIC in particular: the MPs asked challenging questions, and often seemed unimpressed with the answers, on the subject of the HSCIC’s predecessor body selling patient data to actuaries.

After that session, doctor and journalist Ben Goldacre wrote in The Guardian: “There are people in my profession who think they can ignore this problem. Some are murmuring that this mess is like MMR, a public misunderstanding to be corrected with better PR. They are wrong: it’s like nuclear power. Medical data, rarefied and condensed, presents huge power to do good, but it also presents huge risks. When leaked, it cannot be unleaked; when lost, public trust will take decades to regain.

“This breaks my heart. I love big medical datasets, I work on them in my day job, and I can think of a hundred life-saving uses for better ones. But patients’ medical records contain secrets, and we owe them our highest protection.”

Conservative MP Dr Sarah Wollaston, a former GP who sits on the health committee, has also been vocal on the subject of data-sharing. In a Westminster Hall debate on 4 March, she said: “I am passionate about the principles of care.data, and I will not be opting out because of the benefits that the minister [Dan Poulter] and many others have outlined. He mentions the Francis report, and one of its fundamental principles was that people should be open and transparent about past errors and take account of
genuine concerns. I am concerned that what we are hearing from the HSCIC is very defensive. There is a complete refusal to be transparent about errors; it is blaming everything on a previous body. Many members of those two bodies are the same, so for us to proceed with confidence those legitimate concerns must be addressed.”