Pending a cure for cancer, it isn’t often that clinical research gets on the front page of our national newspapers. But – by association – it has done so this week, in the form of great big 80 point headlines about care.data and the dire threat it poses to patient-kind.
In case you missed it (could you miss it?) care.data is an attempt to join-up all the sources of patient data in the NHS so that it can be used to inform decisions about healthcare and – potentially – be used for the purposes of clinical research. The data itself is anonymized. Well, actually it is “pseudonomised”, which is a distinction that only a hardened technie could care about. To the rest of us it means our identity is protected. The core objections to care.data in the media coverage seem to be around the threat to privacy and confidentiality if anonymous data is shared (it’s ANONYMOUS, come again?) and the fact that people have been kept in the dark about care.data’s development and it seems to have sprung out of nowhere to be foisted on an unsuspecting public against their knowledge.
Just to be clear, care.data is not an intiative that the National Institute for Health Research Clinical Research Network has anything to do with. But of course, because this stitching together of data-sources could be used for clinical research, we are keeping an eye. And we ARE involved in a different but similar thing called Clinical Practice Research Datalink, so I have been watching the furore in the press about patient confidentiality and security with a kind of horrified fascination. If the general public is turned against care.data, this attitude could transfer to any “big data” system that uses anonymous patient information for clinical research purposes. That would be a pitiful waste, when the UK is on the brink of being right at the forefront of developments in this area. Developments, let’s remember, that could lead to new and better treatments for you and me.
There are a few things that strike me about the whole care.data shock-horror response.
One thing is why it has taken until now for the media to get the plot. When the NHS Constitution was last renewed in March 2013, one of the alterations included the insertion of a new pledge to “anonymise the information collected during the course of your treatment and use it to support research and improve care for others.” Phew I thought. That’s a short statement with big ramifications. Wait for the debate about privacy etc. and the mass wagging of fingers from Caldicott Guardians across the nation. Never came. In fact, I remember speaking to a national journalist and asking him (in a vague, just-kinda-interested sort of way) if he was picking up anything around the new Constitution. Not a jot was the answer. Yet here we are, nearly a year on from that moment, and the press have suddenly decided this is BIG and NEW. Not really guys, you just missed it the first time.
Some of the journalism on the debate has been pretty shoddy. I listened to a Radio 4 programme (yes, the channel that likes to think of itself as responsible and intelligent) where the interviewer somehow failed to mention that the data care.data will provide is actually anonomous. Maybe just me, but I thought that was a bit of a crucial point? They were in good company. The Daily Telegraph’s coverage quoted someone from an organisation called Big Brother Watch. Hmmm. No particular agenda going on there then.
Another thing that strikes me about all this, is that the fear factor isn’t really about data – it’s more about technology. If we go into hospital we’re perfectly happy to have paper medical notes passed around from person to person without question, the assumption being that it is fine. But put the sharing of data into the domain of technology, and all of a sudden it’s a scary proposition. Apparently. I say apparently because increasing numbers of people are choosing to share their health data – attributable and unanonymized – on various health-related websites. So obviously not everyone is that panicked.
This is not to say that the whole care.data thing has been handled well. It hasn’t. The concern that people have been kept in the dark is, I think, fully justified. I say that as a citizen who didn’t get “the leaflet” through my door, telling me that my data was going to be used to maybe help save my life sometime. As a communications professional, I feel a bit of sang froid about this. My experience of the health sector has – all too often – been that everyone says communication is ultra important, but then doesn’t devote any attention to actually doing it properly. Did NHS England REALLY think that a paltry leaflet, delivered alongside the mailers to transfer my credit card balance and get a pizza margherita couriered straight to the door, would be enough to convince the nation that “the man” is working in their best interests? Considering NHS England’s National Director for Patients and Information is a former journalist, we might have expected a bit more focus on the public’s right to know. Or perhaps the enthusiasm for new technology (and people do get VERY excited about it in the health sector) overcame common sense. Maybe there are a few movers and shakers who need to be reminded that as well as the people who can’t wait to volunteer their entire medical history online (yes, they are out there) there’s a big chunk of the general public whose experience of the technosphere is more “computer says no” than “big data saves the world”. They need to be informed and reassured. Not just once (with a leaflet that maybe never came, from an organisation they still neither know nor understand) but lots of times, in lots of ways, by people they trust.
I think what care.data showed in the end, is that there is plenty of interest nowadays in what data can be provided BY the public (to help businesses, public institutions, charities etc to do their job or make a buck), but not enough care about what data should be given TO the public (about the things that are done using their taxes, in their name). I don’t agree with most of the journalists covering the care.data story that use of anonymous (just want to say that again: an-on-y-mous) details to improve health services is per se a bad thing. But I do agree that from a public information perspective, this was a distinctly UNhealthy project.