Health Data - Time to Tell an Upbeat Story

The problem, I told the National Patient Data Day event in Leeds yesterday, could be summed up in one Guardian headline:

“NHS in new data grab.”

The story back in 2021 was a new project to try to get GP data shared for research purposes. While many people are unaware that their GP health records are not routinely shared across the health service, the Guardian treated the story as if it was the Brinks Mat robbery. This was the first time the scheme had been mentioned in the mainstream media and it meant that it suffered the same fate as its predecessors. The whole thing sank without trace.

I was speaking on a panel on Patient Data and the Media at the conference organised by use MY data, an organisation which I joined a few years ago because it reflected my view that it needed to be made easier for anyone to share their health data.

There are two issues to tackle. First, the unique resource that is the vast lake of NHS data is made less valuable because it is made up of hundreds of streams whose owners - the hospitals and GP practices - are afraid or reluctant to allow them to mingle. But secondly, any story about a big health data collection exercise is treated first and foremost by the media as a dangerous threat to patient privacy. That at least is the charge and there is some truth in it. I have long felt that the risks of sharing your data - the possibility that your information will fall into the hands of people who are up to no good - are given far more prominence than the potential rewards in the form of advances in medicine.

But when it was suggested that journalists were only interested in bad news I felt I had to come to the defence of my trade. Yes, reporters know that a story about your health data being put at risk will always appeal to their editors. But the other health stories that are always popular are major medical advances, particularly if they can be illustrated with a patient who will talk about their life being changed.

As the panel began to address the many questions from an audience of medics, health data specialists and health communicators, it became clear that there was a lot of anxiety in the room. People seemed to feel there was little hope of getting positive stories out about the use of health data, that when there was good news to tell the scientists behind any advance would not mention the role data had played, and if they did the journalist would ignore them.

But this not a time to be timid about standing up for medical science and celebrating its achievements, in which data is going to play an ever greater role. On Monday night a horrifying edition of Panorama about the growing tide of medical misinformation on social media showed just what was at stake with the story of Phoebe Shemirani. Her death at 23 after refusing chemotherapy is blamed by her brothers on their mother Kate, a conspiracy theorist who was struck off by the Midwifery Council in 2020.

At a time when the tidal wave of unscientific nonsense is swamping the online world, there is a need for boldness in defence of the truth. So if the research community feels that it is not being portrayed fairly in the mainstream media, then its members should speak out. And that goes for the politicians and civil servants framing medical data policies too - if they think they have got things right they need to be out there making the case. There are some examples of this - an excellent NHS website gives details of the ways in which data is pushing medicine forward and saving lives. But if my experience of covering the story of the NHS contact tracing app during the pandemic is anything to go by - it was actually a success but politicians and officials would not talk about it - it will be a struggle to find someone who can go on TV or radio and bring the story alive.

At the end of the event someone who worked on one of the major research projects where people sign up voluntarily to have their health tracked over long periods came over to have a chat. He felt there was too much gloom - this year the project had been covered by the mainstream media on six occasions and all had been positive.

There are of course good reasons to be cautious about what the government does with our data - especially when major contracts are given to Palantir, the controversial American software business involved in Elon Musk’s DOGE at a time when it was apparently galumphing through sensitive government databases.

But if we have any hope that AI will transform healthcare we are going to have to find ways of telling positive stories about the health data which will be its rocket fuel.