Sustainable Use of Data
•Download as PPTX, PDF•
0 likes•18 views
A commentary in the Sustainable Use of Data event organized by The EU Commission and Sitra, focused on EU Data Governance Act. https://www.sitra.fi/en/events/how-to-boost-business-with-the-fair-use-of-data-the-european-competitive-advantage/#programme
Recommended
Recommended
More Related Content
More from Mikael Rinnetmäki
More from Mikael Rinnetmäki (20)
Recently uploaded
Recently uploaded (20)
Sustainable Use of Data
- 1. @sensotrend
- 2. STORING DATA IS A LIABILITY. RIGHTS TO USE DATA IS THE ASSET. @sensotrend
- 3. Apache License 2.0 BSD License BSD License 2.0 Simplified BSD License GNU General Public License v3 GNU General Public License v2 GNU Lesser General Public License MIT License … @sensotrend
- 4. Mikael Rinnetmäki mikael@sensotrend.com @mrinnetmaki …making sense of diabetes trends
Editor's Notes
- I’m Mikael from Sensotrend. We’re a health tech startup that makes life with diabetes easier. We integrate with dozens of medical devices and wellness trackers, visualize the data in a way that helps in treatment of insulin dependent diabetes, and facilitate sharing the data with healthcare professionals and peers. We want to extend the data sharing aspect to secondary use of data too. Many people with chronic conditions want to get their data used in medical research, in hope of better treatments in the future. We aim to help this form of data sharing too. Actually, we believe digital health apps such as ours have a key part to play in the fair health data economy. We already have a trusted relationship and an ongoing dialog with the people using our app. Each time someone wants to use their data for some purpose, we can just ask them. And we can even do it on demand.
- There are many companies already dealing people’s health data for secondary purposes. What’s different here? We see that the world is changing. The old, and partly still existing, model for data sharing is that you collect as much data as you can, and then sell either the data, or derivatives from the data, to the highest bidder. In this model, the data is the asset. We see that in the world with the European GDPR and the Californian privacy legislation, and many more to follow, STORING DATA IS A LIABILITY. RIGHTS TO USE DATA IS THE ASSET. We want to build our service from the start according to the new world order. We want to make it human centric, transparent, and sustainable. We don’t store any health or wellness data within our service. We only preserve the right to access the data, and fetch it when we need it, on demand. We wish that when properly implemented, many people will choose a product from a company that respects their rights and their agency over how their data is being used. BUT THIS NEEDS TO BE IMPLEMENTED PROPERLY! GDPR was a step in a good direction, but the current results have even underwhelming. Or purely absurd. In order to read a short news article I first need to read through five to six pages of terms and conditions, and adjust my cookie settings. I’ve heard many people don’t even read the full terms and conditions, and just click on OK, without knowing what they are agreeing with. This is not what we wanted. I wanted true agency over how my data is used. We need something more. And we learned from Frederico Milani and Miapetra that something more is coming.
- What I believe we need, is a voluntary certification mechanism for fair data economy. Something like the certificate for organic production, or the certificate for fair trade. Or perhaps something more complex like the vocabulary and the expressive language of Creative Commons licenses. Or something like popular open source software licenses. The benefit of all of these is that people who really care about respecting nature or respecting fair working conditions, or copyrights are able to recognize these labels with a glance. They don’t need to read through pages and pages of terms. They recognize the label and they can trust what’s inside. WE NEED LABELS LIKE THESE FOR FAIR DATA ECONOMY We may want several Rulebooks. Like open source licenses. Not too many, but a few different ones. It will also help put the more obscure terms and conditions to shame. “What do you have to hide?” “Why don’t you select one of these existing fair terms and conditions?” “Why didn’t you select one of the existing fair data economy rulebooks?” The proposed legislation for a Digital Governance Act includes data altruism as a single point. I don’t think that should be handled as a separate use case. I believe we need to cover many forms of fair data economy. Intermediaries is a problematic concept too. We want to have a fair data operator. We want to be either regulated or certified, and we want to get the trust that results from it. Current DGA mentions intermediaries. But the proposal requires the intermediaries to be fully detached from the actual use of data. We also use the data to offer our service, so we can’t be a regulated data intermediary. That is unfortunate for us. I’m open to discussion on how this can be improved. Another thing would be the Oscar gala of fair data economy. Sitra have published the principles of Fair Data Economy. We should definitely have an awards gala where we celebrate the nominees and the best companies in each of the categories. It is very likely that the label for fair data economy or the Oscar gala for fair data is not the thing that will end the current, more predatory, data sharing practices. It may well be that it will be further legislation that will do that. Or increased awareness and frustration by people, from scandals like the Cambridge Analytica. But what is clear is that if we want the world to change, we need to have a viable alternative. For me the first required step towards that viable alternative would be a voluntary certification of fair data economy. In the words of the MyData Global organization: Let’s make it happen, let’s make it right! Thank you!