Joe’s View: On data fever in the Mekong Delta

On a trip down the Mekong Delta, Professor Joe McDonald’s thoughts turn to the potentially serious disease that is data fever – and how it might be prevented.

Rowing down the tiny stream through the impenetrable jungle of the Mekong Delta, it’s 39 degrees in the shade and the humidity is 100%. You can’t really sweat in these conditions. Well you can, but it doesn’t cool you down – it just makes you hot and wet. Without our lovely local guide, Mii, there is no chance we will ever find the haven of the air-conditioned Sampan boat from which I will spend the next three days exploring the Mekong.

When I was growing up, the Vietnam War – or as, the Vietnamese call it, the American War – was on the news every night. The army hadn’t yet realised that you had to keep control of journalists and so the conflict came vividly into our living room.

Subsequently I absorbed Hollywood’s Vietnam-related content: Apocalypse Now, Platoon, Deer Hunter etc. It’s hard not to play the soundtrack to the war in your head when you’re there. And so, as the Sampan pulls into view, I hear The Ride of the Valkyries from Apocalypse Now and recall the pivotal moment of the movie, when the US forces end up killing the innocent family in a Sampan on the Mekong. It represents where the fevered thinking about the “domino theory” of the spread of Communism tips over into acts of madness. Decent people made monstrous by seriously overheated thinking and rhetoric.

As I write – now in the cool of our cabin in the Sampan, connected by Sampan wifi (obvs) to my NHS trust, with a cold beer at my elbow and listening to the The Eve of Destruction – I’m struck by the sheer madness of the conflict. How could America have ever believed they could win a war in such alien conditions? They may as well have been fighting the Martians on Mars.

From oil to gold

On instant messaging, my CIO Darren McKenna and I discuss the intense competition for NHS data. He reminds me of the movie Mackenna’s Gold. This classic of its kind stars Omar Sharif, Gregory Peck, Edward G Robinson and a cast of thousands. All develop gold fever when Robinson tells a group of desperate men of a mythical canyon of gold where fortunes are waiting to be picked up off the ground.

Unfortunately, the ignition of gold fever “pits all the contenders against each other in a battle without surrender” and the prospectors’ infighting over the untold riches causes most of them to die. Although a handful of the surviving prospectors eventually find the fabled canyon and load a horse with a king’s ransom, only the hero, Mackenna (played by Peck) survives an earthquake which closes the canyon forever. He rides off into the sunset with the riches.

It has frequently been said that data is the new oil. But if data in general is the new oil then healthcare data is the new gold. Higher risk and higher value, more likely to produce fevered thinking.

What’s it really worth? Well, if Roche’s acquisition of Flatiron Health is any indication, a health record with five years of data is worth $1,000. Multiply by 60 million citizens of the UK and 30 years of electronic data which now has a unique identifier in the shape of the NHS number. Let’s say $360 billion.

Two decades back it cost $100 million to sequence the first human genome. Now it’s only $1,000. Imagine the value of a record which routinely holds a copy of your genomic information for precision medicine. Add a zero or two? This is a canyon full of gold and the prospectors are on to it. Data fever is in full swing.

Money, money, money, it’s so funny…

During the National Programme for IT we put £12.7 billion on the table and, as a consultant psychiatrist, I was amazed by the effect big money had on people’s behaviour. It warped space-time, it made fat middle aged Geordie psychiatrists sexually irresistible to software sales personnel. We are talking a great deal more money here so we can expect some strange behaviours.

Naturally, an industry is springing up around these riches and it is right and proper that the NHS seeks to exploit what is a unique opportunity to cash in. But it is worrying that many organisations have sought to get into bed with a variety of companies, often achieving relatively poor value for the data and failing to adequately inform citizens of either the value of their data or of deals being done around it.

As the director of a regional health record project (The Great North Care Record), I have two major fears. Firstly, that one of these deals results in a privacy earthquake through a data breach causing the canyon of gold to be closed off to the NHS for many years. Secondly, that the government might consider itself as a trusted broker for citizen’s health data. I suspect the diameter of trust is smaller than national, given the state of our politics currently.

I was heartened to read NHS Digital CEO Sarah Wilkinson say a lack of clarity about what we are doing with patient data risks breeding “irreparable mistrust” should something go wrong. I am also heartened that, in a world where we can look forward to interacting with the NHS using the NHS App, it would be just plain lazy not to collect citizens’ privacy preferences in a more meaningful way than the national opt out. We can avoid the privacy earthquake and liberate the canyon of gold for the NHS. With public permission.

Stepping out of my air conditioned cabin onto the bow of the Sampan, beer in hand, the lush, impossibly green Mekong Delta slipping by at four knots, I am instantly drenched in sweat, different from earlier though. A cold sweat. I suffer a flashback. Governments can experience data fever. Let’s get it right this time.