Trust is vital to big data’s potential in healthcare

Today the Health Select Committee will take evidence from opponents and proponents of the big data plans of the NHS. The witnesses include Nick Pickles of Big Brother Watch, a prominent critic of the government surveillance programmes exposed by the Snowden leaks. On the other side of the argument, Tim Kelsey from NHS England – who is responsible for and before that led the Coalition’s transparency programme from the Cabinet Office – will be answering questions too. It’s a face off that puts the question of trust at the heart of the debate.

Trust is vital

It’s where it belongs. Trust is vital here. During the six months delay during which the patient data plans are now on hold, some patient groups want the NHS to write to every person in the country on whom it holds data. That’s right, a letter, the new age can’t begin until there is a final salute to the old. But this idea of writing to everyone captures a widespread concern that these plans represent another change to the NHS and we don’t trust that it will be for the better.

It’s worth remembering just for a minute the benefits of the data plans. George Freeman MP, speaking on this issue here at the Social Market Foundation today, argues that using the data the NHS has been collecting since the 1980s will make it possible to analyse the efficacy of drugs and other treatments in powerful new ways. The current model of drug treatment in particular assumes that the exact same drug can help lots of different people with lots of slightly different symptoms. Using big data will create the possibility of much better customisation, just as it does when we use Google’s services for example. In other words big data might mean the end of big Pharma.

The end of Big Pharma?

Is this too utopian a view? Perhaps, but the problem with the debate over NHS data is that it’s hard to hear this view at all. Much as it was hard to hear the view during the previous reform controversy that putting clinicians in charge of commissioning and placing the NHS at half an arm’s length from Ministers might be sensible too. What we are likely to see reported from the Health Committee’s session are the claims made by the opponents of the data plans, the ways in which it might go wrong and how our data could be misused. A close account of the safeguards that could be built into the programme are less newsworthy.

While in the end the plans will probably go ahead our inability to have a full and frank exchange of views over the NHS is going to become more and more a problem. The ageing population means that, without large funding increases – largely impossible in the medium term – funding will be under pressure. Hospitals will have to close. Services delivered in different ways. If we have to wait an extra six months each time there is change in the air then the pressures will mount, not disappear.

And big data isn’t the only technological advance that will change healthcare. The cost of genomic screening is more or less halving every year. Already you can have your entire genome mapped and put on an iPad for around £1000. What does the NHS do when people start turning up in large numbers with new insights on what conditions they are susceptible to in the future? They’ll want preventive action now, at a time when funding is under pressure and the public conversation is moving slowly.

The NHS needs to learn to innovate

I’m not suggesting that the better alternative is to ignore public opinion. Doing that will erode confidence in the health system. But there ought to be better ways to bring public opinion into the decision making process rather than by writing letters. Critically, the NHS has to get much more in the habit of starting the discussion about these big issues before it has made up its mind about what to do. At that point it’s just a communications exercise. And yet the lesson managers should have learnt about the NHS is that we regard it as a national institution, it’s ours, and that’s why explaining change from the top down doesn’t work, getting people involved in thinking about change, helping to design it and then explain it to others is vital. Giving people access to their own data – as proposed by Freeman’s 10 Minute Rule Bill in the House of Commons – and treating them like they are the owners of it rather than the anonymous system administrator would help as well.

A people powered public service? Something like that.


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