Presented at Still Hacking Anyway (SHA2017)
Aug. 6, 2017, 8:20 p.m.
Most of our data is held in a fuzzy uncontrollable manner. We propose a totally different solution, a new paradigm in thinking about your data. In this paradigm you know where your data is, you are in control and data losses are a thing of the past. This presentation will introduce the personal locker. A technical reference (and device) that allows you to actually own and control your data. Big data can have many benefits. But until now you had to store your data somewhere in the cloud instead of at home. This idea will show how to combine different open source software and hardware solutions to build a device which complies to regulations but where you own and control the data. Think blockchain, distributed file systems, encryption, PKI and Open mHealth.
Ending the privacy discussion
Matching life-science, innovation and privacy
Your medical data have been stolen. I can state that, because you can’t demonstrate that they are not. You don’t even know where they are. You think (or better hope) they are save, maybe in a hospital or at your GP’s office, right?
The fact is we are aggregating data in central places. These central places are a valuable target for criminals because they can steal millions of identities at once. And so they are regularly hacked (newspaper articles).
Some of these huge central places where we keep part of our virtual self, do have portals. Like Nike, or fitbit. In fact you might have several portals for instance of your pharmacie, hospital, GP’s office, the government etc. This means many passwords and other forms of logins. Before you know it a decent amount of time is spent on studying the different user interfaces.
Hardly any of these central places give you actual control over your data. Sometimes they are even not in the same country (like the Philips Health Suite). Sometimes you only get insight into whom had access, but you can’t see the actual data about you yourself.
Anyone can combine the huge hacked datasets that are freely floating around and this gives a pretty complete picture of who you are, what you like, what kind of illness you have/had and what makes you you.
We have laws that forbid use of violence against your physical body. How about the pain inflicted on the sum of data that describes you? All these data that – as we speak – others are combining with other sources, without you even knowing it. What about these hacks against your “virtual self”? You may be lucky to live in countries where they actually have private laws. These are usually – for obvious thoughtful reasons! - seen together with the rights concerning your body, though never enforced. The data collected with or without your consent are – once virtual – out of your scope of control!
The solution is, giving you, and you only, the key to your personal disaggregated encrypted data on a single device. No more diffusion and chaos. One box, named a ‘personal locker’, contains all your personal data, your virtual self. The personal locker is the only place where your personal data is stored. The access is permanently controlled and managed by you. You get to choose who has access to what and how (read, write), under your conditions.
Spokesperson in the Netherlands for the Free Software Foundation Europe.