If individuals control their own data, they control their own lives and neither government nor big companies can manipulate us economically or politically. There is a long way to go for that, but there is a growing movement around ‘my data’.
Imagine if you had all your personal data collected in something similar to a bank. In this data bank – or personal data store – you have a dashboard, where you – and/or a third party chosen by you – get an overview of all your data and can control or partly control it.
Here you set you own privacy settings in accordance with your values and prferences; maybe you want your online supermarket to know that you are a vegetarian and care for the environment and fair-trade, you might trust your doctor to have access to all your health data at all times – including your fitness data and your dietary information. Scientists from public universities could be allowed to use your data to find better treatments or health recommendations. Your insurance company needs part of your health data for your health insurance, your baby sitter will have to know how to feed your son who has allergies, and your favorite streaming channel gets better, if it knows, what you have seen before and which instructors, you want to always follow, may be even enriched with your reading behaviour from your online bookstore.
Your data could be distributed and stored on many different servers. For example, many public authorities will sit on your data and are not obliged to delete them, but at least they have to give you a copy of your data. If your privacy settings do not allow someone automatic access to your data, they can ask you for your consent in real time over your mobile phone. You can also set expiration dates for access to your data.
But most importantly, you can activate your data, whenever you find a new service that can help you get a better life based on your data – be it your economy, your health status or your traffic route. It is you who activate your data and decide how they are used.
This scenario is part of a democratic future, where individuals are in control of their own lives (their data) and more of us have become more digitally literate. Obtaining more or less control of our own data, is obviously an advantage to individuals. And in a data democracy, where neither governments (as in China) or big corporations (as in the US) control our data, there must be transparency towards individuals in order not to be manipulated with politically or economically.
For companies, organisations and governments there are also obvious advantages, when access to data goes through individuals: The very best source of rich, relevant, recent, true and personalised data come from the persons behind the data. The person will be interested in updating his or her data, once he or she gets an advantage of it.
Innovative ‘MyData’ Solutions Needed
With individual data control we need more services that can help us activate our data and enrich our lives. In Denmark, for example we have Spiir, a service that gives you better control and overview of your income and spending than the banks traditionally have mastered. Your bank is required to let Spiir have access to the relevant economic data of yours, when you ask you bank to do it.
If a service wants access to personal data, that very same service will give you a fair deal to make you give them your data. The idea is that individuals should get the biggest advantage of their own data. Being ethical with data means putting humans at the center. Humans should first and foremost benefit from their data – after profit, welfare control or bureaucracy optimization. However, it does NOT mean that governments or business cannot benefit or profit from our data as well. But the control is in the hands of individuals, and there should be transparency to assure them that data is only used for what they expect them to be used for.
Get a Copy if Not Full Control
Depending on how a country has organised citizens’ data, the question will be how much data control, individuals can get. In Denmark, for example, it is hard to imagine that the government will give up its full control of our data. With the social security number (CPR) and many years of collecting and organising personal data, the government sees enormous potential in big data for the wellfare society and that is probably true, if the government manages to keep the high digital trust, we still have in Denmark. But at least you can demand a copy of your data. Much of your data will be spread all over private and public databases, and with especially public databases you’ll not be able to delete data – but with a copy of your data, you can make sure that you have the overview of your data. You can also enrich your data with behavioral data such as what you eat, how you move around and how fit you are from your phone or apps – data that is not necessarily available to the government.
The MyData Movement
Helsinki, Finland, is host to a movement working to implement individual data control; “MyData‘s mission is to empower individuals by improving their right to self-determination regarding their personal data.”
Every year the non-profit organisation is host to a three-day conference discussing how to implement this and showcasing start-ups and projects in private and public organisations, who are working in the direction of self-determination for instance by creating PIMS, Personal Information Management Systems, PDS, Personal Data Stores or other parts necessary for this. This year the conference is part of the official EU presidency.
One of those spearheading the movement is the French organisation MesInfos. For years it has worked with the public and private sector to help them give users back control of their data. One of the examples is the teachers-owned insurance company MAIF who is piloting a test giving back data to their customers. Also Japan is trying out individual data control. And the founder of WWW, Tim Berners-Lee is building the infrastructure behind this with Solid.
There are many other ‘personal data store’ start-ups out there. Midata is a Swiss health personal data store, DataForGoodFoundation is working a a personal health data infrastructure in Denmark. Digi.me is from the UK and is probably the biggest and best funded personal data store. Meeco is another. And so is Safeonline.
And this is just the beginning. The GDPR is putting individuals at the center and in control of their own data and private and public investors are beginning to see the idea that individual data control is part of a data democracy.