Value architecture diagram - value indicated in orange.

Donate Your Data is a service that allows individuals to receive ownership of their personal health data and make choices on how to share it with public health research studies. The service offers researchers the opportunity to instantly access digital health information according to the level of pre-consent that is selected by ‘data donors’.

Donate Your Data makes it easier for researchers to gain legitimate access to historic and real-time population health data. The system behind the service is designed to handle personal health information in a trustworthy, transparent way by leveraging the power of a distributed ledger mechanism offered by the nascent technology, Blockchain.

Personal health data

Each time a person uses a public or private health service, information is captured about their visit, diagnosis and treatment. This information is typically recorded and stored in centralised data silos across many different locations, both nationally and abroad. These silos are built to be secure and trustworthy, however, this comes at a cost: it is more difficult to access and retrieve datasets for other uses, such as for health research and development projects.

Access to healthcare datasets in Denmark today is limited by several administrative and technical frameworks that are in place to regulate the access of data. While some Danish research institutions have the power to grant access to certain health registers, access to other registers requires researchers to seek approval from multiple owners. In these circumstances, the request-to-access process can take between 12-18 months. Reducing this period of time would speed up the rate at which research could be performed.

Introducing the personal health chain

In order to provide researchers with the necessary depth of information required for health studies, it is proposed that a 'Health Chain' is offered to individuals who choose to register with the service. This 'connected data ecosystem' would be created by collecting structured datasets from a various public, private and personal sources. In this case, Blockchain would be used as a 'golden thread', providing each individual with a mechanism by which to claim access to their data from each silo.

Positioned alongside existing health donation services

With control of their personal health data, an individual would be free to make choices whether to share their data for use in health research studies. They could then expect to receive either a short or long-term return on their donation.

Similar to how people today register to donate blood and organs, it will soon be possible to become a 'health data donor', and make a choice over which research institutions are permitted access to your personal health data.

In the short term, upon completion of a study, researchers would be able to inform all anonymous participants of how their donation was used in the research of a specific topic. This action would create a positive loop whereby donors would gain transparency over how their data has been used. They would then be in a better position to make further decisions on how to control and share their digital health data, possibly going beyond research purposes.

Furthermore, in the long-term, donors may end up receiving customised health treatments developed according to their unique biological response to previous conditions and treatments.