I have a special “first-party” relationship to data about me, and it is for me to reuse too.
My data is about me, it’s “my story” – or at least the digitally captured part of it.
Data about an individual, their home, their travel, their interaction with other people, the services they use, their health, their behaviors, and their preferences can be integrated to generate incredibly powerful insights and a more complete picture of their story. These insights can be used to develop personalised services, products, and experiences, which might be commercial or public services. I might want to share what’s going on for me (my heart rate) with another person (my GP). It’s important that individuals have control over whom they allow to use their data in a personal way, as data could otherwise be used coercively to identify and target a person against their wishes.
So people have a special relationship to data about them. Any Person Data Commons needs to respect that as a first principle.
Therefore the primary Community of Interest for a data market transacting data about people is, of course, the people whose data is it is. We want to maximise value for ourselves. I want to integrate my story and manage whom I share it with. Adding banking data to my tax data makes bookkeeping easier. Adding it to my Flybuys data helps me with budgeting. I want to share my Fitbit with my GP or fitness instructor for personal value. My genome, government-held medical record, personal health-sensing device, and food purchases might make a highly personalised health service possible.
Individuals can benefit directly and indirectly from the integration and sharing of their data. Direct value might come in the form of personalised financial, fitness, health, or Internet services. Indirect value comes from the non-personal use of data, in the form of improved public services, a stronger civil society, and scientific and technological benefits for all society.
Most current data integration exercises are for interests other than the individual. Google does data integration to sell it to third parties and extract financial value from it. In return they provide an email service or a search service. They don’t let me use my personal data (the story they are building about me) nor allow me to share it with third parties of my own choosing. I’m lucky if I even know the story they have about me! This is the same for a range of other government and non-government organisations: they collect and integrate data for their own interests and I have no control over the process or ability to see the story they are developing and share it with whom I like.
The primary objective of a Person Data Commons is to create a platform for safe data integration and reuse within the power of individuals, enabling them to form data sharing relationships as they see fit for their personal value. The main locus of decision-making about access for personal uses of datashould be the main beneficiary or risk-holder – persons themselves.