Sharing patient data is something to be celebrated, not feared

In her later years, my mother never went anywhere without her handbag. It contained a home-made folder in which she’d listed all her ailments, and the copious numbers of pills she was taking. Her fear was not of people finding out she was a depressive diabetic with heart problems. It was that no one would know, if she was admitted to hospital in the middle of the night, because the NHS is so hopeless at joining up information.

This weekend, privacy campaigners are raging that NHS England has asked all hospital trusts to upload patient information on to what will become a central database. This has been described as a “land grab” by software companies which “throws up huge doubts” over the security of sensitive patient data, according to the Conservative MP David Davis. A group of activists and doctors are planning to sue the government to reveal more details. But the hysteria is misplaced: this is a long overdue attempt to give us all a version of my mother’s folder.

When NHS staff are at breaking point, they deserve decent IT systems to relieve them of energy sapping, time-consuming trawls through emails, spreadsheets and filing cabinets. Last year, London’s Chelsea and Westminster hospital reduced inpatient waiting times by a staggering 28 per cent by bringing together staff rotas, operating theatre timetables and pre-surgery tests into one place that both clinical staff and administrators could access. Before then, operations were booked without anyone realising the surgeon was due to be on holiday and theatre space stood empty because the patient hadn’t had the preoperative assessment. No one even knew how many people were on the waiting list.

The Chelsea and Westminster project was made possible by a quiet revolution in the pandemic. In March 2020, as a temporary adviser in the Department of Health, I sat in daily meetings incredulous that officials couldn’t even agree on how many people were dying. As multiple agencies argued with each other and made frantic calls to hospitals, the government decided that information must be brought together in one place. In a few months, the UK went from being a data desert to a world leader in knowing who was most at risk from Covid, which hospitals needed ventilators, and later who had been given which vaccines. Clever software consolidated a host of information from different parts of the system, allowing leaders to make much faster decisions.

To me, this was an uplifting story of how data saves lives. To others, it was a sinister move, a conspiracy to abuse the NHS’s unique store of 55mn health records. Lacking the technical capability in-house, the NHS licensed software from private companies including Microsoft and Palantir Technologies. Palantir attracts particular suspicion because it has defence contracts with the CIA and was co-founded by the Republican donor Peter Thiel. It also revels in its own mystique, which only fuels accusations of secrecy. But its London staff seem like earnest techies, not ideologues.

There is no doubt that health data can be very valuable, and there are egregious examples of companies profiting from sharing it with third parties, as 23andMe did with genetic data. Any new technology must hold patient data securely, and use it ethically.

At the moment, the NHS owns the software, and “writes” our data on to it. The software companies make their money from selling their products to the NHS, not from selling data to anyone else. As one frustrated senior NHS executive said to me: “no one thinks that Microsoft can read the document you are writing in Microsoft Word. Why would you think database software is any different?”

Palantir is bidding for a £480mn contract to build the NHS operating system, which is due to be awarded this autumn. As the FT has reported, a consortium of companies including Voror Health Technologies, Eclipse and Black Pear are competing against Palantir, claiming they will be better at safeguarding patient data.

Regardless of who delivers the service, transparency is vital. The government and NHS don’t help their case by being defensive. I have spoken to doctors and executives who are hugely enthusiastic about the platforms which have been built, but won’t be quoted. The strange Americanisation of language in UK tech conversations — calling doctors “clinicians” and chemists “pharmacists” — doesn’t help either.

Public trust is essential, because much is at stake. The prospect of putting together our health records with the genetic data in which Britain is a world leader offers a very exciting future for this country in life sciences. It would help us develop new breakthrough drugs and run large-scale clinical trials. Yet right now, we are falling down the global rankings for late-stage clinical research. The Swiss pharmaceutical firm Novartis has just dropped plans to run a large clinical trial in the UK, which would have involved 40,000 patients testing a cholesterol drug. We need to move faster if we are to reap the benefits of joined up records.

This means leaders must be prepared to shout from the rooftops that sharing data saves lives and staff time. Life sciences experts and the National Data Guardian like to describe the NHS’s set of cradle-to-grave health records as a “treasure trove”. We must watch out for pirates. But keeping it locked away for years hasn’t helped patients — least of all, my mother.

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