A data intermediary, which gives individuals control of their own personal data, can provide more data sharing and new insights to the benefit of all. Via EU-funding, the Data For Good Foundation has implemented a new eco-system which promises trusted, secure data sharing.
VisitData is a national Danish platform that provides the tourism sector with new insights. It combines anonymised data, including summer house and camping bookings, retail turnover, event calendars, mobile data, weather data, and more. This data can lead to forecasts such as the number of visitors to specific locations, whether there is a need for another cafe in a specific holiday resort, or when to maintain the roads to avoid bothering too many tourists.
Similar forecasts could be made with anonymous health and behavioural data, e.g. data like sleep, steps and heart beat that you collect yourself from your gadgets. These data could be of huge benefit to both society and the individual patientss. But as it is personal data, citizens should give their consent to the use, anonymised or not, and most would shy away from that, if they don’t trust the receiving end.
This is where Data for Good Foundation, DfG, comes in. It provides an ideal framework for extracting value from personal data in an ethically responsible way. The data is controlled by the person the data is about – that person says yes or no to whether the data can be used for various purposes. Companies, organisations, and other stakeholders can request consent to use people’s anonymised data, and DfG can carry out confidential computing analyses on the data in a highly secure encrypted version. Via ‘multiparty computation’ aggregated insights and statistics are produced without exposing raw data.
This innovative approach to data sharing is not only complying with all EU’s strict data laws. It also gives individuals a unique chance to be in the driver’s seat of their own digital lives. In recent years, trust in the public sector in Denmark has nose-dived, and it is much easier and faster to lose trust than build it up. Therefore, a human-centric solution is urgent.
A new ethics white paper on DfG: ‘The Ethics of A Platform for Data Sharing’ is looking into the ethics of a platform like DfG. The foundation is about to finish a three year EU funded project, CRANE, on establishing an ecosystem, where personal data can be shared safely for self-empowerment and informed health policy decisions.
There is undoubtedly a huge demand for insights derived from anonymised personal data, whether for research, treatment, or societal benefit, as well as for profit and growth. Given Europe’s strict data protection regulations, the approach from DfG represents a significant economic opportunity for the continent.
But DfG is also for direct data sharing with e.g. your doctor, for example blood sugar or sleep cycle, and here we are not talking about anonymised data.
“Unfortunately, we are seeing growing distrust in data sharing due to the way some companies – intendedly or not – have capitalised on our data,” says CEO of DgG Annemette Broch. “We risk that citizens will end up saying NO to data sharing. Therefore, we need a New Social Contract on the Use of Data, that can be trusted by citizens, as well as private and public organisations. A contract based on a neutral governance infrastructure that creates value for individuals and for society at large.”
Download and read the full white paper here
Hear the podcast (in Danish) about data sharing in a democratic way
