Should I opt out of the Summary Care Record?

19 Mar 10

It seems that, ever since I joined Pulse in February 2007, I’ve been writing about the Summary Care Record.

There was the original early adopter programme in Bolton, Bury, and then a further four PCTs. There were data protection fears. Arguments over consent, whether patients should opt-in or opt-out.

Connecting for Health had set ambitious targets for the national rollout of the programme. (One of the first stories I wrote for Pulse, based on Connecting for Health guidance to SHAs, was headlined ‘Summary Care Records for all by end of 2008.’ How time flies.)

But while the project has been dogged by privacy concerns and technological delays, it is now finally, belatedly, becoming reality, with an accelerated rollout in London and some other SHAs.

And yesterday, it got very real for me, when a bulky looking envelope from NHS Tower Hamlets arrived through my letterbox.

Tragically, I'm a bit of a connoisseur of Summary Care Record Public Information Programme letters (two such letters early on in the rollout demanded patients explain their reasons for opting out in person), so I scrutinised it carefully.

As these things go, it was very comprehensive – and addressed pretty much all of the concerns raised by GPs earlier in the rollout.

It was, as I say, a bulky envelope, and official looking – so it wasn’t likely to be dismissed as junk mail.

There was no demand for an in-person opt-out, and while there was no opt-out form included in the pack, there were clear instructions of how I could go online to do so.

The information booklet too was comprehensive, even explaining explicitly that if I chose not to opt out at this stage, I would not be able to delete my record at a later stage, although it could be hidden.

In fact, the only criticism I could really find to level at it was a journalistic typographical quibble. Is it the ‘Summary Care Record’ or the ‘summary care record’ – the literature couldn’t seem to decide.

But the question of whether I should personally opt out of having my record shared is a bit of a head-scratcher.

It feels strange not to, after years of reporting on GPs’ very reasonable privacy concerns. The supposed protection of role-based access controls not withstanding, do I really want hundreds of thousands of NHS staff to potentially have access to my records?

But the counter-argument put forward in the literature was compelling. Sharing a Summary Care Record will help improve the standard of patient care - my patient care - it was argued. It’s a patient safety issue.

I know from personal experience how bad communication can be between different elements of the NHS, and as a patient, when it comes to theoretical privacy versus practical safety, there’s only ever one winner. It’s a guess, but I expect many will feel the same.

But then came this morning’s worrying reports of the leaked draft findings of the next official evaluation into Summary Care Records, by researchers at University College, London. The top line? That some of the records which have been uploaded already ‘contain inaccuracies and omissions that make it difficult for doctors to trust it as a single source of truth’.

Could opting to have a Summary Care Record actually be less safe than not having one at all?

It’s back to the drawing board then, and I’m still no closer to deciding one way or the other.

I have twelve weeks in which to make a decision. And of course, with an election likely before then, the Summary Care Record may not still be around in twelve weeks.

If it is, and I haven’t decided to proactively opt out, my record will be uploaded by default. I may yet decide to do so – but the privacy versus safety debate is balanced on a knife-edge, and it takes a lot of initiative to proactively opt out.

Which is what, I suspect, Connecting for Health are counting on.