Where to start? Kick-starting the Person Data Commons

Although individuals about whom data is collected are the primary Community of Interest for a Person Data Commons, a first customer is needed to kick-start the project and attract participants, beginning the virtuous cycle of an expanding network effect and attracting further participants so that data donators receive value in exchange for their data.The ideal first customer for a Person Data Commons is the NGO community, for several reasons.

NGOs want to share data to improve their services, learn about their performance, and coordinate mutually reinforcing activities in pursuit of shared goals. The current data landscape of the NGO sector is fragmented,and this is recognised as a problem. Significant benefits could be delivered very quickly by making more data accessible, with a standardised process for gaining access and a watertight mandate for use based on the consent of data subjects. NGOs report that their frontline staff and clients must collect the same data over and over again, a process that is time-consuming and expensive for the organisation, and tiring and humiliating for the client.

The ability to access a client’s data through a Data Commons network would save money, time, and dignity, and make NGOs’ service delivery more consistent and responsive.

The market is already producing various manifestations of a Person Data Commons. Apple Health and PIMS are just two examples of private enterprise capitalising on the potential to derive value from integrated data about people. The main challenge for founding a Person Data Commons that adheres to the NZDFF principles of value, inclusion, trust, and control isn’t the technology; it’s stimulating the involvement of the first tranche of participants.

The best way to create an incentive for communities to invest in demonstrating the value is to set about solving one specific challenge that is of high value to those first participants, but ensure that the methodology is accessible, adaptable, and scalable so that it can be expanded to accommodate other solutions for other communities. The challenge is in ensuring that the initial point solution can be scaled into a generalised solution that offers a diverse spectrum of value to multiple parties.

There are already communities of interest in the social sector who are building the trust and shared vision required to coordinate their efforts around a common objective. Some current examples are the Manaiakalani Trust mobilising around housing and education needs, and Platform Trust, Te Pou, and others mobilising around mental health and addiction services with further interests in education and other social needs.

These alliances would benefit enormously from the ability to exchange data safety and effciently, whilst maintaining the trust of the people they are working for. The key advantage of beginning with these groups as a first customer is that they have high trust with their clients, clear objectives, andan articulated need for effcient data sharing and interoperability. However, the challenge is that whatever we do here has to be of direct value to the people who are donating their data. They can be motivated by a safe harbour, but to get real traction will require demonstrable personal value.