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Data4Life is an open source initiative that enables individuals to share their personal data with local communities and national authorities seeking to gather as much data as possible in order to make informed decisions about prioritised actions and resourcing. It addresses the fundamentals of data availability as well as concerns around privacy, digital surveillance and the appropriate use of personal data. The solution makes it easy for individuals to allow the use of personal health-related and location data for the public good (aka ‘data altruism’) by collecting both explicit consents and authorization to perform data subject requests according to article 15 in the GDPR. The solution supports individuals’ risk status and decision-making and thereby saves lives and also leads society to an economic and social recovery by “unlocking the paralysis”. In other words, it helps people make decisions that will benefit society. Longer term, the Data4Life solution can also be used to prevent future outbreaks and enable preventive care.
The Data4Life solution provides the following benefits:
Individuals have an app to assess for themselves the risk of their unknowingly transmitting the virus or and taking action accordingly. It also provides a means of contributing their in vivo data as well as posthumously for the public good. The solution has a human-centric approach to personal data (in line with MyData Principles) where individuals are empowered to control how their data is used. By giving control to individuals, concerns around digital surveillance can be addressed effectively. Via a location-based heatmap, the individual can be alerted and take action based on the following criteria:
- They are at low risk of being infected → Continue as far as possible to lead a normal life, such as going back to work
- They are at medium risk of having contracted COVID-19 → Be cautious and continue to monitor ongoing developments
- They are at high risk of having contracted COVID-19 → Self-isolate, get tested if start showing symptoms
- Verified as infected → Self-quarantine to protect others. Get tested for antibodies to enable verified immunity from a trusted testlab
Local authorities can make informed decisions based on the data collected through Data4Life, optimizing public resources (e.g. identifying hotspots for sanitation, contact tracing, resource planning at nursing homes). By being transparent, authorities can create trust in society and reduce panic by using the collected data to refine public health recommendations e.g. around mass immunity.
The data-using entity defines the purpose for which the data is collected. However, the data resides with the individual in a personal data vault and individuals can opt-in or opt-out from sharing their data, in real-time, for a particular purpose e.g. contributing data for research of risk alert systems. Data can be analysed without the data leaving the vault, collected data is aggregated preventing re-identification through using federated machine learning. Historic data can be repurposed by the data using entities with the explicit consent of individuals.
For the community at large: By re-using the contributed personal data for population health research, the solution also supports predictive health recommendations and helps to prevent the spread of a virus and future breakouts. The solution also opens up the possibility for posthumous data to be donated to the health and welfare authorities.