Irish Government data, our data

Damien Mulley wrote a thought provoking post about Microsoft HealthVault -

"If medical records go fully electronic and you can upload all your records to a single site and throw in all your medical bits and bobs like prescriptions and the like and then allow any doctor or health provider to access this data then … screw you HSE."

Which drew some interesting responses from commentators, like this from Conor O'Neill -

"After the bullshit we’ve been through trying to get one of our kid’s x-rays out of CUH, anything is an improvement. They appear to think that they own our data. Not only that but we took the kid to a consultant who said he wanted to take an x-ray. We pointed out that it had already been taken but GP forgot to send it to him. Problem would have been solved instantly by HealthVault. My data on my terms, stored and accessed by who I chose. And not a single illiterate HSE staff member who can’t spell our kid’s name to be involved anywhere."

I went for a colonscopy in Bon Secours hospital Tralee recently where a nurse (not someone from admin) spent 20 minutes transcribing my answers to the same questions I've answered every single time I've been in hospital. Why skilled nursing staff have to manually submit data which has already been recorded on some other hospital computer somewhere, time and time again, just boggles the mind and smacks of the desperate state that our health service is in.

In a post to Blognation Conor widens out the topic beyond one sector of our civil service to ask the question - is it time for a government API?

"Expecting the public service to build webapps for us is a fool’s errand. They would spend €100m, take five years and it wouldn’t work when it was finished. However, if they make each department’s data available along with some simple APIs, then citizens can do it for themselves, or pay someone to do it. Free unlimited access to all APIs for individual or non-commercial use and some small pay-as-you-go for commercial use.

There is still a strong belief in the public service that somehow they own our data whether that is a hospital telling me I can only get my son’s x-rays through the Freedom of Information act, the Ordnance Survey keeping an iron-grip on GIS data or local government publishing data in proprietary Word docs and PDFs."

The Ordinance Survey situation galled me so much a few years ago, when I bought my first GPS device, that I setup a Yahoo Group called OpenEir to see if we could build an “open source map” of Ireland. There was quite a bit of interest but it never took off.

On a separate note I trawled through all the government department websites lately in search of RSS feeds and found that only 5 departments - (1)Communications, Energy and Natural Resources, (2) Enterprise, Trade and Employment, (3) Environment, Heritage and Local Government, (4) Health and Children, and (5) Social and Family Affairs, provided feed for their press sections. The department of Health and Children stands out for offering 6 separate feeds. How ironic that it’s not Communications, Energy and Natural Resources!

I was actually thinking of building scrapers for each of the other departments but feck it… why should I even have to consider that. Yes, Government should also have an API but RSS feeds would be a nice simple start!

Comments

[Niall Larkin]

Impressive post. I don't know where this fits into the larger issue exactly but there's also the very serious current issue of our data being accessible to any civil servant with the nosey inclination to look it up. That seems to me to be the big noisy elephant in the living room on this issue that everyone is convenientily ignoring. So serious is it that I know a worker in the HSE who has forgone medical treatment because that medical treatment would then be on a system which is accessible to all his coworkers (and its not treatment for something that anyone could be embarrased by). And another who (unsolicited) relayed detailed financial information about a company I had expressed a passing interest in. I was stunned beyond words on both occasions. And on both occasions was met with a response that was little more than a shrug. Taking Joe Drumgoole's comment that Ireland may be a country with zero degrees of separation we all probably know several civil servants with access to our personal and private data and the personal and private data of everyone we know. If a new system layer/interface is to be discussed I would love to think that something could be done about this issue.

[James Corbett]

Very good points Niall. I know a few lads working in the tax office in Limerick and often tease them about the Dolores MacNamara case even though it's no joking matter. But isn't it very sad/scary that someone would forgo treatment for fear of his coworkers finding out :-(

[Adam Green]

I agree completely, James, but beware of unintended consequences. America passed a medical privacy law, called HIPPA, to handle universal medical record access. The result is that a doctor is unable to talk to a parent about their child's medical care over the phone under penalty of law. Basically, they ignore that, but they are forced to break the law repeatedly. Telling the government to fix something means that the government will write the laws that fix it. Catch-22.