In this future, people keep personal health data close to their chests. There have been too many incidents where personally identifiable data leaked from the NHS and the Government Data Service.
International legislation was put in place to govern fair sharing, management and trade in data. But it became harder and harder to legislate, with new uses of data discovered all the time.
There was a drive to simplify the complex systems around health data in the early days, to facilitate trust and adoption, and widespread access to simple tools. There are data centres that enable people to run their own analysis rather than keep their data to themselves, but these haven’t been very popular.
People are generating data, but keeping it in their own reserve and not contributing back to any system. Pockets of citizens are trying to set up new health data provenance infrastructures to encourage a system of sharing again.
Analogue is one of the few remaining devices on the market for those that want to contribute their data to a commons. The device needs to be connected to a data centre via a plug so data can be shared with a wider network. It is not possible to do this remotely and users need to be careful about getting ‘weighed down’ with data.
Data centres can only accept people every four to six months. Those who contribute data are given a voucher for wellbeing. As a record of this exchange, the user takes a print out of their personal medical records for the period since they last took part in a transfer at the data centre (provenance box).
1. Sensors and monitor bands to collect data
2. Data Gauge to monitor when it is time to visit a data centre
3. Provenance Box for printed records and to track details of where data is collected