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.
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.
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.
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?