What does care.data mean for information sharing?

What a difference a week makes.  The rain abates, and the floods are no longer top story on the news.  If your front garden (or front room) are still soggy or submerged, you’ll still be thinking about the floods, but it is no longer a priority for most of the British public.  In the two weeks since we last blogged about care.data, the debate around the introduction of the system has grown, with the latest news being that NHS England has delayed roll out for six months.  If you dip into twitter, or read comments under online articles (perhaps not the best place to look for considered and unbiased views), there is a huge amount of hostility being expressed to the proposal.  So what can we learn from this, that might help future debates on information sharing?

1.  Don’t expect the public to see information sharing as a good thing, per se.  One of the easiest traps to fall into is to believe that the benefits of information sharing are self evident – cheaper and quicker development of drugs, a better understanding of how the whole NHS system spends its money, more effective treatment for the population, especially those affected by rare diseases.  Then, for those of us interested in whole-system approaches, there is also the opportunity to take a more holistic view of the needs of citizens – sharing information to wrap all sorts of services around individuals and families.  But those benefits need to be articulated, and communicated in a way that is meaningful to people.  The difficulty of getting this right can’t be underestimated – a plain English leaflet, delivered to every household in the country, sounds like it ought to work, but NHS England are now being asked to consider the other approaches available.

2.  Don’t forget the natural (and understandable) scepticism of many of the public.  The sharing of information doesn’t often make the news, but when it does, it is usually because it has gone wrong – personal details have been lost, destroyed or otherwise obscured.  This makes the public sceptical about the safeguards that protect personal information – even if those with a legitimate interest in accessing the data know how robust the safeguards are!  A complicating factor in the care.data debate has been around the issue of whether commercial organisations should be able to access the data.  The majority of medical research is conducted by those organisations, but many people are concerned that their data is being used for commercial gain, rather than the public good.  This leads to calls for the data to be restricted solely for non-commercial medical research, which excludes many of the potential benefits of information sharing with other public services.

3.  Use ‘nudge’ ideas wisely.  Opt out rather than opt in makes sense in theory; it uses inertia for maximum public benefit.  Research undertaken by Ipsos MORI demonstrates that, even when people say they are concerned to protect their personal information, the majority don’t take the basic steps already available to them, such as changing default settings on their computer’s browser.  But it may create a perception that a proposal is being ‘sneaked through’, or that something is happening which the Government would rather you didn’t know about.

4.  Individuals can express differing views on information sharing, depending on who is asking, and what you ask them.  A debate that often surfaces is to what extent the public think their information is already shared, within the health service, or across the public services more widely.  If you work in a local authority customer service centre (for example), you might be able to give plenty of examples of callers asking why they have to update the electoral roll, when the council already knows they live there because they pay council tax!  So when surveys are published which state that a certain percentage of the public are for or against something, we need to be mindful of who has asked what question, of what group.

To return to the flooding, a recent article on the BBC reviewed the recommendations made in Sir Michael Pitt’s report on lessons from the 2007 floods.  Many of the actions had been followed up – flood defences built, environments managed.  But the report included suggestions for what householders themselves need to do to prepare for flooding – having an emergency kit ready, moving sockets up the wall, keeping a stock of flood boards and so on.  The BBC concluded that most householders in flood areas hadn’t taken those actions – the impetus was on the Government to prepare.  If this year’s floods have been a prompt that we all need to take responsibility for preparing for flooding, perhaps the debate around care.data will prompt us all to take more interest in what information is held and shared about us, and what risks and and benefits could result.