What if your health data never left your side?

What the situation looks like now

Personal health data is generated every time we interact with the healthcare system and gathered in different places: a medical file, hospital records, health insurance databases, public health databases, universities, etc. This data can later be reused (ie. for purposes beyond your direct individual care), linked and shared under strict rules and conditions. 

A different perspective

Personal health data could be stored in one place: by the citizens themselves. Such a platform would be giving citizens ownership of their own data and actively involving them in decisions about the data. This gives citizens the guarantee that they can share their data in a safe way as a leverage for both personal wellbeing and the common good. The We Are Health project aims to develop such a platform. 

How could this be realised?

Solid technology can provide citizens with personal data vaults, meaning that instead of interacting with servers which store your data externally, your data always stays with you, in your personal pod (for example an app on your phone). Citizens can control who and which applications get access to data in their pod. Data are stored in a standardised and interoperable format, allowing different applications to use the same data. This means that applications always need to come look for your data in your pod, rather than being able to store it on their own servers. The separation of data from applications is a key concept in Solid, challenging the current situation in which organisations collect personal data and keep them under their control for their own use. In short: your data would no longer be stored in different places, but different users would come looking for the data in your pod, which is under your control.

 

What are the advantages of this system?

• the citizen is in the driving seat 
• the citizen can manage his own data
• there is clarity at all times about what happens to personal data
• the citizen chooses which data (whether or not anonymised) may be used and by whom
• Institutions and/or companies are given new opportunities for research and development
• there will be collaboration with existing platforms for data sharing
• ethics, sustainability, transparency and innovation go hand in hand and are at the service of society

What are the disadvantages of this system?

• it may become harder to obtain data from representative samples of the population
• some research may receive more or less support from citizens, regardless of their importance, risks or merit - for example because of corporate, media or interpersonal hype.
• citizens would need a lot of data awareness and education
• it may prove difficult to scale this technology

This approach may prove very advantageous for those citizens who want to share their data beyond the current standards of practice. In that case, this kind of platform offers a safe, citizen controlled way forward to more data sharing in a trusted environment, without disrupting current frameworks for health data reuse that improve healthcare and advance scientific knowledge.

What do you believe the role of citizens should be in health data reuse? 

Have your say here!