Building health software on decentralised health data using Personal Online Datastores
Part of the Our Connected Universe specialist track
Increasing awareness of personal data stored on centralised servers and individual need to access personal data in a connected world 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 build privacy focused data infrastructure and associated software applications called the Solid Health System which will provide individuals with storage, 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). Open source Solid server provides users with a secure online storage space called a personal online datastore (POD) to store their own data 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 with the Dart and Flutter framework to interact with PODS on a data pipeline built with Python.
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Indigenous controlled health care clinics such as Gurriny are providing whole of person care, requiring the integrated view of the patient's medical, health, social, and cultural data to better support the patient to manage their health in a complex environment of multiple social determinants impacting health. Using a PODs-based app, the patient can maintain control over their highly personal data, and can access personalised health information that supports a strength rather than deficit-based approach to health care. Health and health-related data are both collected by and shared with the individual enabling patient centred connected data that is required to provide integrated health care services needed for the treatment of chronic diseases. Gurriny will use this PODs-based digital infrastructure to integrate and analyse patient data to provide personalised holistic point-of-care health services and develop the evidence to understand and innovate integrated health care for chronic disease. This presentation will explain how Solid PODs work and outline how to build PODs-based software applications.
Dr Moore is the Chief Operating Officer and applied data scientist of the Software Innovation Institute (SII), which is developing data science analytics and software engineering solutions in the ed tech and health tech sectors collaborating with partners that require research and engineering with new computing technologies in data privacy, knowledge graphs and machine learning for public good applications. Dr Moore supervises SII project research and engineering teams, manages engagement and impact with clients, and trains students participating in these projects to prepare our graduates to work with these new technologies. Her research interests engineering software applications over Social Linked Data (SOLID) server technology and Personal Online Data Stores (PODs), consent management, analytics and data mining and data systems for complex governance collaborations. Jess is the program convenor of the ANU School of Computing postgraduate programs in data analytics and data engineering. She has over 15 years post PhD experience in data analytics and governance, and also has a PhD in Astronomy and Astrophysics (Galactic Dynamics) from the ANU and BSc Hons (Physics) from University of Melbourne.