Unlocking health data for personal access and reuse

Increasing digital connectivity and awareness of personal data stored on centralised servers is driving the development of frameworks to support data sovereignty and privacy. The Australian National University’s Software Innovation Institute is collaborating with Gurriny Yealamucka Health Service (Gurriny) in the Yarrabah Indigenous community of North Queensland, Australia, to develop a privacy-focused model for personal data storage to guarantee that individuals will have ownership and control over their own health data. This model is using Social Linked Data (Solid) technology, a decentralised data storage specification for software application development, using open standards mostly developed by the World Wide Web Consortium (W3C), including the Semantic Web technology stack. Users of Solid have secure storage of their own data in an online storage space called a Personal Online Datastore (POD) with granular control of data sharing using data access control policies to provision a trust-no-one environment.

Cross-platform software applications are being developed to provide patients with the ability to record and access their own health data with control over the sharing and use of that data. A Gurriny POD and related applications will receive data shared with consent by patients. Gurriny will use this PODs-based digital infrastructure to integrate and analyse patient data to provide personalised holistic point-of-care health services, improve communication with patients, and collect evidence to understand and innovate health care services. This presentation will cover the Access Control Policy Language and vocabulary extensions we are implementing, and the health data ontology we are developing using the W3C Web Ontology Language to store health data in PODs as a knowledge graph based on the W3C Resource Description Framework.