In The Guardian: surgeons’ deathrates online (but not for reuse)
The more things seem to change with government-collected information, the more they really stay the same. The latest example: surgeons’ deathrates, which will be made public under a new NHS scheme.
Except that, as we point out in NHS plans to reveal surgeons deathrates online in today’s Guardian, the data won’t be in a very usable form (at a guess, it’ll be a stack of PDFs – not even Excel files). And you’ll be banned from reusing it in any meaningful way.
It’s all of a part with the NHS Choices website, which will have the data:
NHS Choices is one of the government’s most lavish web projects, designed with web 2.0 very much in mind. Among other services, it promises “a social network for health”. A strategy published earlier this year says: “When people want to comment directly on their experiences of particular services, whether positive or negative, NHS Choices will become their first port of call.” The two-way information flow “will empower people to make informed decisions about their health and social care”.
However, while the strategy enthuses about the power of information in the new web world, it makes no mention of allowing re-use in mashups and commercial ventures. The site’s terms and conditions themselves suggest such use is out of bounds: “For your own personal non-commercial use you may copy, download, adapt or print off copies of the materials, information, data and other content included on NHS Choices (’NHS Choices content’). You will need to obtain permission in writing from us before you make any other use of NHS Choices content.”
Now, let’s be clear that surgeons’ deathrates are easily misinterpreted. Someone who only ever does grommets isn’t going to have the sort of patient deathrate that someone doing open-heart surgery or brain surgery might. (There’s even an argument that what matters isn’t the operating-table mortality, but the 30- or 60-day mortality, since this tells you how well the patient recovered from everything.)
Nevertheless deathrates have a basic utility: it could have helped, for instance, to more quickly identify the Bristol heart babies’ abnormally high deathrates.
Then again, the BBC article linked to there is from 1998 – that’s ten years ago, folks – and in it, we’re told that “ministers believe the system [to make patient death rates at hospitals public, slightly different from this latest scheme] will become a powerful tool to raise standards and share information on the NHS.”
Kind of hard if people can’t reuse it easily. And also: “it could also work as an early warning system to prevent cases similar to that of Bristol.”
The data will need to have extra information, clearly, about what sort of operations were being done; simply saying “Surgeon X: deathrate Y” is inimical and useless. We’ll have to see..
- The following posts may be related...(the database guesses):
- In the Guardian: who owns the NHS's data? (28 April 2006; score: 25.82%)
- Legal victory: statute database will be available to all for free (19 October 2006; score: 24.58%)
- FOD interviewed for BBC iPM on making court records available online (28 September 2008; score: 16.85%)
- Why aren't public servants' details public? (5 October 2006; score: 16.52%)
- At last - free tide data, going back nearly 100 years (13 April 2006; score: 16.39%)
June 12th, 2008 at 10:01 am
One of the little-known things about PDFs, though, is that it’s actually often possible to “screen-scrape” them and extract the information back into a usable, structured format.
I’m currently working on a project to do exactly that with a large quasi-Governmental database, made available in PDF form free of charge, but for which hefty licensing fees are charged for access to the raw data: it’s progressing well and I hope to have some news of it soon.
This doesn’t solve “you’ll be banned from reusing it in any meaningful way”, of course. But they can only really stop distribution of the data – not the tool to reverse-engineer the data… and so, little by little, we chink away at them.
June 12th, 2008 at 10:27 am
@Richard – yes, it’s true you can extract useful stuff from PDFs. (I use OSX which has various Unix tools such as PDF2text available.) It’s more when you have big tables that it’s hard.
Plus the fact remains that it’s about the *spirit* of what’s being said in the conditions: “don’t use this for anything but looking at it”, almost. Why not mash it with, say, the league performance of schools, density of hospitals, prevalence of smoking, any of dozens of different indicators which might tell you why a surgeon appears to have a high deathrate but actually might not?
That’s when you’ll see the spikes that tell you something odd.
Look forward to hearing about your “quasi-governmental database” soon, certainly.
June 12th, 2008 at 1:57 pm
So the NHS Choices strategy is that “When people want to comment directly on their experiences of particular services, whether positive or negative, NHS Choices will become their first port of call”?
All very well – except that Patient Opinion (www.patientopinion.org.uk) began offering exactly this a year earlier, is independent of government, and encourages a wider range of stakeholders (patients, NHS providers, commissioners, LINks, MPs, patient groups) to get involved in improving local services.
June 13th, 2008 at 9:05 am
i have been practicing general surgery for more than 15 years. if my mortality data has to go online, how does government expect me to offer surgery to high risk patients? obviously i have to look after my data and ensure that its not skewed by those who have less chances of surviving operation.
June 15th, 2008 at 5:39 pm
Anil, that’s a cogent objection to the scheme as a whole. (And one which, I believe, has had a good airing in professional forums.) Our point here is that, if the data are to be released, they should be released in a technical format and under licensing terms that encourage re-use. As with crime statistics, some of the re-use will be moronic – but isn’t there also the possibility that opening up data will raise the tone of the debate? Is that madly optimistic?
m
June 18th, 2008 at 9:14 am
Bernard Ribeiro, president of the Royal College of Surgeons, contributes to the debate in the Guardian’s letters page today.
http://www.guardian.co.uk/commentisfree/2008/jun/18/nhs.health
Interesting points, I thought. Especially the one about mortality data being only the start.
June 28th, 2008 at 7:13 am
New information from a very good source: NHS Choices data is going to be available via XML feeds for free-re-use; where they plan to draw the line is on cutting and pasting whole blocks of text. The worry here is that if stuff is duplicated all over the web, NHS Choices’ search ranking will fall.