Thank you so much. Good afternoon everyone. Thank you for being here on a Saturday at 5 p.m.
Today I will present some ongoing work from my PhD. I tried to give it a bit of a title that draws attention.
Let me know if you think the title is completely bogus and I will put you in the acknowledgments of my next paper.
So what I study is data donation and as part of my ongoing research, I get to talk to lots of people about how they see data.
Most of the time you hear things that you're probably already well aware of.
Like, data is the new oil, data is like the sun, but one that I particularly like is data is the new soil.
I like soil because it has something generative about it, something natural, something that we share, something that's just there.
And when I put data is the new soil in Dali 3, because I also like to play with General to the AI, it came out with this beautiful picture.
I find it very ironic because what I study is voluntary data sharing that people share for a public interest purpose.
And as we all know how this machine was fed wasn't, you know, with the same type of data that I am trying to learn more about.
So hopefully that sets the scene.
But also, before we dive into the content, I would like to introduce myself a bit more. It's my first time at full stem.
I first time.
Oh yeah, okay fun.
I'm a PhD candidate in innovation studies at the Copernicus Institute of Sustainable Development at Etrecht University in the Netherlands.
And what we try to do is find out how data can help make the world a better place.
And in that sense, I'm looking at data donation as a method for us all getting more engaged in science and also finding new solutions based on what we already know already have.
My academic background is in economics and financial law.
Actually, financial specialized in insolvency.
This was about, I've always been very interested in this idea of failure and what we do after.
After my master's at the study to work a bit, I worked in the construction industry working on public private financing.
So we have to think of our bridges who's going to do the insurance for that, very rewarding work.
If anyone was ever interested in doing something other than foster them related things.
And afterwards I started teaching tax law at the University of Plight Sciences in Amsterdam where I was involved in a minor called the internet is broken and we're going to repair it.
There's a bunch of different students from different disciplines.
And we're just seeing, okay, what is wrong about the internet and what can we do to fix it?
So returning back to this idea of, okay, repair, repair, repair, I want to do something with my PhD.
I am a bit of a sentimental person I have to admit.
Also today is officially the second anniversary of my PhD.
I started two years ago, I'm halfway.
So for me, it's also like looking back a week evening.
So my laptop is also in need of repair.
And I wasn't done with the slides.
So I had to ask for a lot of help.
Thank you, Victor.
Because this is his laptop and I turned my PowerPoint, which is not free open source.
So really, it is my first time at Boston into a PDF.
And I also like to thank Zaz Akunitler, a good friend of mine who took the time to turn my PowerPoint into a PDF because I do not have a laptop.
My laptop is in need of repair.
My presentation was in need of repair.
The way I'm seeing repair is really all the steps in between breakdown and the solution.
But when we talk about digital repair, I would like to focus on some more common practices.
Because when I was making the slides, I did not know that my laptop wouldn't work.
So it's just something I'm putting in now.
But you also think of Wikipedia, moderation or community-led software maintenance as sites of digital repair.
Something goes wrong.
People come together and try to fix it in one way or another.
So how is data donation a site of repair?
This is more of a working question, something I'm asking myself for this point.
Because when you look at breakdown, what could breakdown mean in the case of data donation?
In the case of the laptop, it is clear.
It is not turning on when I put in the power charger.
It doesn't come on with the right light.
So it's very clear when it works and when it doesn't.
When we look at data donations or the voluntary data sharing that I'm talking about,
the breakdown I have identified so far.
With a question mark, it's two fold.
First of all, it's the lack of access when it comes to data sharing.
So there are a few large pages which I will not need.
Which have more control and access to data than other parties may have.
And also there's a case of mistrust.
Who do we share with our personal data more specifically?
To repair.
There are different ways to dealing with this problem.
And one of them is building alternative infrastructures.
And another one is to formalize trust through policy.
To think of new logos, new standards, new protocols, make sure that now all of a sudden there.
This was called the API age.
However, due to either exorbitant costs or just straightforward,
it not being allowed anymore.
This API is not being shared with researchers anymore.
We have now entered the post API age and we need to find different ways of accessing the same data.
In the EU, we have the GDPR which really allows us all to ask for our personal data.
And these researchers have gone on with it to see, okay, what can it do?
What do you actually need from the law in order for our research tools to work?
But also what are the alternatives to APIs if it's not data donation?
So for example, screen tracking.
When we look at port that's after this on their websites, very lovely.
It gives you an idea of how it works.
I'll just walk you through it.
So first, you need informed consent of the participant.
So the so called data donor that could be any of us who has an account somewhere.
You can just go to the website and request your personal data and come in a nice little package.
Then this data is what they call digital trace data,
because everything you do online on these platforms, they just keep track of it.
You first stored locally on your own device.
That could be your phone.
It could be your laptop.
And then using port you can select which data points you would like to share with the researchers.
And once you've shared it, the researcher has it and they can work with it themselves.
There are some nice examples of what port can do.
These are just four of them.
If you go to the website data donation EU, you can find many more examples.
For example, you can see what is going on when people watch Netflix.
Netflix is famous for not exactly sharing their viewership numbers.
It's anything but open.
But if you get lots of people to share the data,
we can actually get a sense of what's going on on these platforms.
One that I also really like is the mapping the digital food environment using YouTube.
I thought that was very original and creative.
Something that didn't expect to find with data donation research.
But there's a lot going on in this field.
But there's also something that we can all participate in if we like to.
Because I assume most of us have an account at one platform or another.
So you can always check out which projects are going on and where you would like to donate your data.
However, the research also identified that this isn't going perfectly.
And I guess it might be particularly relevant for them to find out where the issues are when it comes to.
The type of data packages that we get.
So we see, for example, that most of the issues come from incomplete data packages.
So some information is missing.
And this directly comes from the platform provided because they are not sharing it.
This might not have been an issue if we were not aware of it.
So as data donation researchers are doing this work to replace a way of doing research that has been blocked by platforms.
We're still finding out the platforms by not doing everything they're supposed to do players and actors to ensure there's some trust and transparency going on.
This is something I mapped out in the previous paper.
You can recognize the data altruism organization because they have one of those logos up there.
It's very recognizable.
So far, there's only one organization that has registered.
But anyone can register as long as it's a non-profit that has a sole aim of being an intermediary for data for some public interest purpose.
The public interest purposes have to be aligned with some national interest.
But as you can see, the first one that I've turned a little circle around it is for scientific research.
So this also great opportunity for those who are interested in opening up research a bit more.
To make sure that it's attractive for other people and that people know that it's trustworthy and it's transparent.
It also has the compliance and trust from the EU.
The first one, the first data altruism organization we have is data log and no one is based in Spain.
What data log does is they try to make sure that users get to know more about how they use their data.
So people in Barcelona can give their household data, so energy, water consumption, all that type of data.
To date a log, they in return to get a personalized report saying, okay, this is how your use differs or could be better managed.
And then they use that data for all other types of scientific purposes.
And the last one we have is the social economy code of conduct.
So what we have here is a project that I was involved in. This is me sometimes I wear a suit.
And we were working on a code of conduct together with all these different social economy actors to find out what's going on.
That we did a lot of what we call articulation work within repair studies.
So making very explicit what is going on, what are we trying to do?
We made a list of values, we made a checklist for all these organizations and potential data donors.
But also we made a list of 30 examples of best practices or organizations that are doing well.
Some of them are even here today at Boston such as open food facts.
So this isn't anything new.
But when we were doing all of this work, we weren't talking to any developers in the previous presentation.
We also have different circles and they don't really overlap.
But I'm trying to say right here, there's lots going on in the EU and there are lots of participatory activities and co-creation sessions.
So if there's anyone here who has any idea on how to make sure that openness is also guaranteed in the systems.
Feel free to join. Feel free to talk to me after the session.
And we can see what's possible.
So that brings me to the end of my presentation.
I have some discussion questions, but these are things that I find interesting because once again I'm working on my PhDs.
If you'd like to think along, that would be great.
But if you have any other questions right now, I will be very happy to answer them.
Thank you.
Yes.
I used the early parts, like I've noticed, because I apologize.
It only was a bit of a donation available to me.
What should be on the common monopoly data spaces?
And that's making available a lot of them.
They're particularly hard and they use.
And the AI also impregnages the people out of development and data storage centers to be able to use that.
This done, the collaboration with you are like, how do you work with that?
Repeat the question.
Thank you so much.
Sir was asking, what is the relationship between this whole data donation data
and ongoing effort for the European data spaces?
When we look at, for example, this code of conduct.
There's a lot of ongoing work right now.
So it isn't very clear how everything relates to each other.
Actually, we're in the process of laying all of that down.
So here in this document, we do try to make a link between that,
especially promoting this work at the European Data Space Support Center.
But because it's at this stage where lots of things are being formed,
it's actually quite attractive if you have any ideas to also just send them an email.
Are there any open or ongoing projects which aim to make it easier for the donation data
basically to make it easier to donate the data just having an online questionnaire
or what's your name, which is where you live in.
Do you rent your own apartment or whatever, just for them to identify your accounts for you
and then asking for you for that data and thus allowing them to automatically download
based on a series of simple questions rather than going through.
It's easy for us to ask each individual potential data over what the data is that they hold
and then forwarding it and actually.
So if I understand the question correctly, the answer is of shortened.
The question is shortened.
Is there a central point where a potential data donor can volunteer
and then they're given a set of questions so they can be identified where their data may go?
No, at this point I am not aware of any such point, but if you think that's something you could build,
that will be amazing and we can talk about it.
Yes?
Sorry.
So when it comes to data sharing a problem that I see is if you'd go for an opt-in approach
that would give you a massive selection bias.
I don't know how it's currently done, but I was also thinking.
I think a lot of tracking uses cookies which are stored locally.
So I think it would also be interesting to look at maybe having an approach
where trackers that are in the form of cookies that are locally installed by the big data
miners to give users the option to also send that same information centrally.
So when it comes to a selection bias, is there already a discussion on whether it's opt-in or opt-out?
Because I think opt-in would have a huge selection bias.
So the question is, date selection if you consider an opt-in system instead of an opt-out system,
how do we deal with the possible selection bias that arises?
Well, when it comes to data and the ways being shared in use, especially algorithmic systems,
there is already a huge bias.
People from different groups of the population share the data at different rates,
which unfortunately does cause adverse effects that we didn't plan beforehand.
When we look at an opt-in or opt-out system, when you compare for example to organ donation,
then when you go for an automatic opt-out system, that already goes much higher,
however, when it comes to data, the purposes can be much wider than when it comes to organ donation.
Organ can only be used at a specific place in one person's body, whereas data could be used for public interest purpose,
but also a private profit driven purpose.
So because of the nature of data, we cannot go for an opt-out system in the same way,
but we can ask centralized servers, think of for example,
internet service providers or anything else, what they do specifically,
non-personal data or anonymize data to see if we can make more or better use of data.
Well, what I'm proposing is...
Yeah.
Okay.
Let's have a good one again.
Thank you.