Not-for-profits, iwi, community groups, and service provider networks
Any group with an interest in understanding and integrating data about its individual members, in order to mobilise for and orient community-based activities, can benefit from access to a peer-to-peer market for data exchange and sharing. The exchange of data facilitated by a commons platform would support activities such as advocating for policy, or monitoring the health of the community. There are opportunities for both non-personal uses of shared data in this space, such as research into housing needs for informing an advocacy programme, and personal uses, if individuals within a community consent to their data being used to solve particular problems.
Examples of organisations who would benefit from using data in this way include the Platform Trust and Te Pou (who are mobilising around mental health and addiction) education entrepreneurs such as the NEXT Foundation, the Manaiakalani Trust, Tuhoe, and the Canterbury health alliance network. Low-cost data sharing and integration, and interoperability across communities of interest on a high-trust Data Commons that is in the control of the participants, will improve the ability of communities to mobilise the value of their own data and community.
At present, the information landscape of the NGO sector is a patchwork quilt of information systems that would yield enormous benefits for their owners if they could be joined up for easy sharing and access. There is a great willingness to share information amongst NGOs, as it’s widely acknowledged that service delivery could be improved for clients with more and better access to data. There is scope for operational effectiveness gains,the development of new and better commissioning and funding models, innovation, and collective action.
There are several key obstacles to data sharing in the NGO sector, including disparity in information-gathering systems developed in isolation from one another; and control over who can see the data, for protection both of clients’ privacy, and of NGOs’ business interests in a competitive contracting environment. Narrow interests trump the collective and local value of a more general solution.
A Data Commons solution for the sharing and integration of data about people would address both these issues.
Disparate data –in terms of both content and format – is an obstacle to sharing and integration, as NGOs have a wide range of data entry and storage processes. Many reporting metrics are of little to no value in assessing service performance or individuals’ outcomes, particularly in isolation. By sharing and integrating data about people, a Data Commons would provide NGOs with opportunities to improve their services, become more responsive, learn about their clients, take a more holistic approach to clients’ wellbeing, and collaborate with one another using shared measurement systems to work towards common goals.
The control principle that would be applied to the Data Commons is of particular relevance for the NGO sector, as NGOs’ sharing of data with one another would need to be a controlled transaction to protect the privacy of the individuals whose data is being shared. Additionally, NGOs are unlikely to want to share their data without direct control over who can see it, and what they can see. With a decentralised network model that enables direct peer-to-peer sharing, NGOs could be confident in their control over who can access their data, and secure in the safety of a sharing system that does not depend on a vulnerable central hub. With a guarantee of control over the sharing of NGO data, the Person Data Commons can enable the creation of enormous value for NGOs, and for the public who use their services.