A non technical, dynamic data linkage approach to service data requests from a digital health registry

Paola Pettit¹, Ryan Bennett¹, Adam Smith¹, Chris Williams¹, Yvette Wyborn¹, Dr Megan Tones¹, Prof. Matt Bellgard¹

¹eResearch Office, Queensland University Of Technology, Brisbane, Australia

Background: Clinical and patient-driven registries are critical for detailed data collection within a diverse, national and global patient cohorts. The open source Trial Ready Registry Framework (TRRF) has been deployed in a number of different clinical settings including: cardiovascular, neurological, neuromuscular, lipid and metabolic disorders, IDD. Key TRRF functionality include: dynamic eConsent, multiple language support, simple to create/edit electronic Case Report Forms, patient reported outcome measures (PROMs), functional scales, and reporting.

Problem: The system was designed to enable users with non-technical backgrounds to administer the registry. However, in the TRRF reporting module, report designers required working knowledge of SQL to design reports – a non trivial exercise that usually required BA and/or Developer intervention and delays in generating custom reports.

Methods: In this presentation, we provide an overview of an approach where registry curators and clinic managers can intuitively and quickly design new reports without any technical (SQL) knowledge. A GraphQL https://graphql.org/ schema dynamically seamlessly meshes both demographic and clinical data.

Result: Custom reports, through a new report design interface, can now be generated instantly with greater flexibility and extensibility. This work was part funded through the NHMRC and Digital Health CRC.

Biography:

Paola Pettit is a software developer with extensive experience in agile software development environments.

Ryan Bennett is a senior software developer with extensive experience in agile software development environments and managing teams.

Professor Matt Bellgard is the inaugural eResearch Director at Queensland University of Technology and has attracted over $46m in research funding, co-inventor of 5 full/20 provisional patents, designed and commissioned a world’s top 100 supercomputer, co-authored 160 articles in areas including human/animal/plant genomics, bioinformatics, health informatics, AI, biosecurity, eResearch, HASS radio astronomy. He leads the design and development of digital health solutions for government, industry and academia, addressing policy, privacy, consent issues across multiple jurisdictions.