SND hosts visitors from the project Making Nordic Health Data Visible
Last week, the 1st to 3rd of March, the project Making Nordic Health Data Visible is having an international meeting at SND. Programmers and metadata-experts from FSD in Finland, NSD in Norway and DDA in Denmark are visiting us for the project’s fifth meeting and their last hackathon.
The project is financed by NordForsk, and their general purpose is to aid CESSDA’s goal to make science data easily accessible between different countries, languages, and scientific disciplines. A lot of the work goes towards creating a prototype for a joint search portal for data in health and medicine. Information and descriptions of the data will be within the portal, but the data itself will stay with the original service provider. A link to this will be provided through the portal.
Before the project comes to an end, a report will be written. This report will describe the project, and what has been done within its scope, but first and foremost it will discuss the problems that arise in trying to build an international data portal – it’s not all easy, according to Dag Kiberg, head of section at Norwegian Centre for Research Data, and leader of the project. For example, you need to come to an agreement about what keywords are needed, which documentation standard to use, and so on:
– If you’re to find data you need to know what to search for. And how to filter? When you get hits you need to know what’s been filtered out? So keywords, controlled vocabulary and metadata standards are central.
Another problem stems from the definition of health data:
– There are subjects in the outskirts, for example data on living conditions – is that health data or not? That’s what we’re discussing.
The meeting also hosts visitors from France, who observe and compare the project to a similar project they’re working on, and they have similar problems. The Nordic Health-project seems to, for now, have agreed on a broad definition of data for the portal:
– The portal as it is now contains broader data, from health habits and living conditions to more “hardcore-medicine”. Much of the data is survey data, but there are also big cohort-studies on public health, for example.
Except for these tangible products that the project will create, there’s also another, less material goal:
– This is a networking project. We work so that the involved staff get to know each other. And the work follows from this personal level too, it’s easier to cooperate if you know each other.
The meeting takes the form of a so-called hackathon. This means that the work group is split in two – the programmers work together on developing the portal, while the metadata-experts evaluate the portal and discus how it should look, its problems and merits, and so on.
– Yesterday and today we’ve made big changes. So it’s incredibly effective. I think that if this had been a project where no programmers were involved, where we just would have described the work in a report, it would have gone right in some filing cabinet somewhere… But now we have something that works. And the prototype we had to begin with looks completely different now, after we’ve had some input.
The last meeting of the project will be in Bergen in September. Everything has to be completed by the time this meeting takes place, and problems that have not been solved by then will be described in the report as lessons for future projects. Even if the portal isn’t complete before then Dag Kiberg thinks that the project has given many valuable lessons to the people involved:
– We think that the portal can be good to have, both to show what can be done and to have something to present, not just a description. CESSDA wants to build a data portal, and they might want to use some of the technological solutions, some programming languages and things like that. The functionality can be moved, even if the product isn’t.
The format with a workshop combined with hackathon seems to be something to remember for the future, and that’s what Dag Kiberg has learned most form during the project:
– What I’ve personally learned most from, that’s the work method. It’s been absolutely fantastic.