The news this week was of a 10 fold variation between PCTs (remember them?) in what the report called ‘major amputations’ for sufferers from diabetes. Not only diabetes sufferers – the rate of amputations was higher whatever your condition. You would appear to be least at risk from over-enthusiastic orthopaedic teams in and around London. If you live in the South West you will have to fight them off. There is a good colour map on the BBC news site.
This was my latest excursion into the world of using data that was once not collected or was only visible to the priesthood and now is out there for us to use for our own benefit. Perhaps Zoopla should add this information for house hunters to its lists of what is up for sale and rent. Now there is another push for open data from the Policy Exchange picking up a point made by an European Commission report in December last year that government data is/are gold. If governments give these data away, the benefits are far greater than the money earned by selling stuff like postcodes. We need to sweat the asset of government data and put those data sets to use. After all accessing them costs little or nothing.
The Policy Exchange want to build on Tim Berners-Lee’s celebrated call for Raw Data Now and get a right to public data enshrined in all legislation where seeing and accessing the non-private data would be the default for citizens and organisations. Governments could still invoke national security and confidential Ministerial advice as grounds for keeping it to themselves.
Help for Consumer Representatives
This would certainly help people like user representatives who struggle to get hold of the information they need to do a good job – I remember working with Water Voice members who had to rely on a rather unreliable mix of statutory information from the regulator, briefings from the industry and the water companies themselves, personal connections and their own skills acquired elsewhere to get a sense of where and how they might make a difference. If they could appeal to a statutory right, it would shorten the time and uncertainty involved in making Freedom of Information requests. The Policy Exchange report suggests a score card for organisational performance which has a heading which takes us on from Customer Satisfaction to their suggested Community Satisfaction score.
Getting it wrong not argument for withholding info
Some like Ian Greener in his academic blog oppose this development – we are talking here of dense and difficult data which will lead users to wrong conclusions and wrong choices – or so he and others claim. I have always taken the view that getting it wrong is not an argument for withholding information. Consumers are always making bad choices even after the most extended internet searches. But practice makes if not perfect then at least better, assuming always that the wrong healthcare choice leaves us an opportunity to try again. But the giveaway which reveals what so often lies behind these arguments is expressed by Greener as follows:
Patient choice isn’t really a driver of improvement, it’s a kind of sop to make us think we are driving up care standards when we are really just trying to look after ourselves
And trying to look after ourselves is so wrong? This is condescending in the extreme – this academic is not a fan of Adam Smith:
By pursuing his own interest he frequently promotes that of the society more effectually than when he really intends to promote it. I have never known much good done by those who affected to trade for the public good.
Scraping not scrabbling for data
Undeterred then we come back to the data. There is certainly a lot to go on – the estimate is that there are some 7,900 distinct datasets in the UK Gov’s central data portal. The tough task is to be able to mine and make sense of the content – scrabbling around for the thread that will take you through the information maze. There is a very useful table in the report listing some of the organisations who are already using public data to create products and services. I liked the look of Scraperwiki where good people will either get information for you or teach you how to get it yourself by ‘scraping’ it off websites – it does not hurt at all and amputation is not on the agenda.
And just like the buses all coming along together – of course now we know that in advance in London since you can text TfL and ask for the times of the next few buses – I got an email from James Munro of Patient Opinion who tells me his team can now send me scheduled reports tailormade for me on the customer stories they collect. My suggestion to James is that he can link up at once with someone like Scraperwiki and link his stories to some other clinical data and add a whole new dimension to the information he supplies. We have already blogged on the findings that patient and carer-anecdotal evidence is often backed up by the clinical evidence. If Patient Information can join those datasets together, we will all see the benefit and make better sense of why we will get our bits cut off here but not there.