It’s not often that you hear about the things you do at work being discussed in the press (unless you’re a celebrity, I suppose) – and particularly not if you work on information sharing issues. But in the last few weeks, the topic of sharing health information has been much in the news. It makes the front page of today’s Guardian (“Police will have ‘back-door’ access to health records despite opt-out, says MP”) and has also been in other articles here, here and here, in comment pieces here and here, and on the letters page. It was discussed on the Today programme on BBC Radio 4; the ICO has blogged about it. It was even source material for The Now Show (God bless anyone who manages to make jokes about pseudonymisation). It seems that the value of health data is beginning to be understood, whilst the legitimate concerns about how it might be used, who might use it, and how it will be looked after are also coming to the surface.
One of the most difficult things when trying to gauge public opinion is that data sharing means different things to different people. Most often, politicians and public service administrators talk about case by case information sharing – so, Mrs Jones is about to be discharged from hospital after a fall at home, and the housing provider is made aware that Mrs Jones will now need a hand rail, and that it needs to be fitted ready for her return on Tuesday morning. There’s a scheme in South East Essex called the Single Point of Referral that takes this kind of information sharing a stage further. In this situation, when Mrs Jones (or her carer or neighbour) has a fall and rings 999, a clinician visits her at home, decides whether she actually needs to go into hospital, and then refers her straight on to receive the kind of support she actually needs (physio to help get her mobile; someone to fit a handrail; visits from the district nurse while she recuperates). Most people would agree that this kind of information sharing is what we’d all like (though there are contentious issues, even in these kinds of scenarios).
Then there is the type of information sharing that the new service care.data will allow – large scale datasets, being used for analysis and planning. Much of the debate about care.data was focused on pharmaceutical or insurance companies, using health data to understand more about drug interactions or to develop new treatment approaches. But in the example above, health information isn’t just being used for health purposes – it’s having an impact on social care. And health information is vitally important to all sorts of public policy issues: for example, sending someone who has been long-term unemployed to a CV skills clinic might be a complete waste of time if their depression or anxiety means they couldn’t cope with job interviews. If we know that, on average, 15% of people who have been unemployed for more than 6 months are likely to have mental health issues*, we can design or commission services which help them more effectively. That doesn’t mean that we want to end up with a list of all those people who are long-term unemployed with mental health issues, it just means we need to be able to cross-reference datasets, in order to understand the scale of the issue and to plan effectively, so that when someone with those needs is in front of a Jobcentre Plus adviser, they can be referred to the service they need.
This kind of cross-referencing and analysis can be managed in such a way as to protect the privacy of individuals, and the controls being put in place by the Health and Social Care Information Centre are very strict – I’ve learnt so much in the last couple of months about how to generate encrypted unique identifiers, and I’ve barely scratched the surface! But the concerns that individuals have are completely understandable, particularly when it comes to data losses – government, and the NHS, haven’t always had the best record of keeping data safe.
Using health information in ways such as these has the potential to bring enormous benefits, both to people receiving these services, and in making sure that the public money we spend is spent effectively. But it creates a demand on all of us, to think differently about the value of our information, and about the level of risk we are prepared to accept in return for those benefits. The information we share with our doctors, social workers or Jobcentre Plus advisers is different to the information we share with Tesco or Google; the benefits we could see are that much greater, as a consequence. We are fooling ourselves if we think that sharing nothing means there is no risk – so the debate needs to move beyond simply ‘opt in or opt out’, to help us all think through these important questions.
*NB this figure is entirely made up.