AMA - Data Openness and Covid

[giorgia.lodi]

@alberto

I have a second question, that concerns data on the COVID apps for tracing. Back in the spring of 2020 there was a lot of attention, with most major governments launching their own apps: and a lively debate on whether those apps would work, and whether their benefits were worth the risks to privacy. We also participated in that debate. People in this community tended to see the emphasis on apps as a sort of technological hail Mary, and were cautious about the usefulness of the apps in this pandemic, though more upbeat about the next one.

@alberto

One participant had this to offer:

I am currently involved with a group building a contact tracing app. But I am uneasy, actually thank you for giving voice to my anxieties. I do not see my colleagues discussing the use cases for this tech. I do not see them asking themselves if their solution is going to be effective. I do not see them discussing failure modes of the technologies. Almost everybody is hiding their head in the sand about the consequences of these solutions, intended or not.

Almost a year later, we are left wondering about the effects of those effort. At least, we should have ample grounds for an evaluation. But we are left wondering: the Italian one has been criticized; so, apparently was the German one. There are more positive analyses for Switzerland (paper, paywalled) and, especially, the UK, where it is estimated that every patient who tested positive and agreed to notifying her condition via the app resulted in 1-2 averted infections (paper).

In all this, the Italian app has the merit of maintaining a repo of open data on GitHub. The English/Welsh NHS COVID-19 app also has a page of downloadable data, although I cannot find a license. But it is no so for the Scottish and Northern Irish versions of the app. One of the saddest cases might be that of Belgium, where I live: no official data at all. A recent working paper by U Gent had to resort to an online survey. Only 2.2% of respondents had ever received a notification of exposure from the app (paper).

What do you make of this situation? Why are these data so difficult to obtain? And who do you think is publishing them? Is it the companies who maintain the software (that seems the case, as I cannot find the data from the app on the Italian government’s open data portal, they appear to be only on GitHub)? Is it the public health administrations?

Update:

• French data
• Swiss data
• England-and-Wales data (not sure these are open, cannot find the license).

Wow! What an important and controversial topic. We are speaking about statistics? Or do you mean the data coming from the tracing app? To the best of my knowledge the data of the app is under the control of the Italian Ministry of Health. The app in Italy was designed to take into account the privacy since its design. I do not see so many issues and honestly that data would be so beneficial to trace how outbreaks can be formed and where they are (in schools? A great debate in Italy and we still do not know!). At the end of the story, I am not sure the potential of the app was understood neither by people nor by institutions. Indeed it did not work, also because such an innovative element was put in place in a very old system that does not reason in terms of data for instance. So the app and all its data are both resulting useless at the time being.