Open data for health and early years

Matt Thompson – UK Health Security Agency
Mor Rubinstein – freelance consultant, London

Matt – “I am coming from the place of being a data provider for the health sector. And I want to know what we can do to do more to get health data out there, and what questions could you answer if you had more data. What good could you do?”
Mor – “I am coming from the demand side, as a data scientist and mum. If I want to know what early years services are out there, and whether they have places, and whether they do special needs, can I get that? And the answer is no.”

So, the synergy: how we put data out there, and make sure people can find and use it?

Who decides what is interesting?

An open data camper argued that, the moment, the government publishes data, and it decides what is interesting. So, the question is how to work out what users want, and then how to publish that, without, as she put it, “swamping” users.

Mor agreed that finding out what people want is key. “The question of how we do user research on data is an issue, and I don’t think it is something we do well,” she said. “And when it comes to access, to people can use it in an easy way, I don’t think it is done well.”
Another speaker argued there are some good examples of this being done. But publication is a challenge: most users can’t be expected to interograte databases, so a lot of information that is published is put out in visual formats, that can’t be interrogated.

A speaker from Manchester said the council is getting much better, because citizens have asked for data on issues like traffic. “They were getting asked for it, and they had some data, so they put it out as open data.”

So, he argued, “that bottom-up” approach is critical. Mor agreed, but suggested that sometimes public bodies could just think like their users.
Ofsted, she said, conducts a big and expensive census of early years providers every couple of years that is used internally. “But they don’t think perhaps mums would like this information.”

And what’s commercially viable?

The session moved on to discuss the economics of open data publishing. A speaker pointed out that it would once have been difficult to find out information about the facilities offered by hotels. But now, big, commercial aggregator sites have solved this: initially by scraping individual hotel websites.

On the other hand, they have the economy of scale to do it, and to keep the information up to date. These kinds of incentives aren’t always available to public bodies.
Although speakers argued that government and councils will be much more likely to publish information if they see a clear benefit.

Mor argued there were clear use cases in health as well as early years. “I used to work for Parkinson’s UK, and they used to run a census of people with Parkinson’s in the UK,” she said.

But health authorities already have this information. They just don’t publish it – or make it available through sites like openSAFETY.  If they did, it would “save a lot of money” for charities that they could spend on other things.

Unfortunately, a further speaker from Manchester said its local health trust had just invested millions in an electronic patient record system – but it doesn’t interoperate with other trust IT systems, or the IT used by other trusts.

So collecting information at a national level is far from straightforward. Industry standards would help a lot. However, Mor, Matt, and others pointed out that successive strategies have made the case for interoperability and using platforms like openEHR, but little has changed.

Also, the trust speaker argued, there are other drivers that might lead the NHS away from open data, as it realises the value of the data that it owns. The council speaker said he didn’t want to sound “too doomy” but the NHS is working with a big, US company on a federated data platform to make use of its data – and it’s certainly not open.

In short, there are practical, and commercial challenges to getting public bodies to publish open data. Perhaps the only way forward is to keep asking – and to be ready to demonstrate the commercial or other benefit for doing it. Mor – “As users and providers we need to come together and push.”

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