Holistic Approach to Data Linkage at Monash University

• Main Authors: Nadine Andrew, Chris Mac Manus, Komathy Padmanabhan, Mark Lucas, Anitha Kannan
• Format: Article
• Language: English
• Published: Swansea University 2020-12-01
• Series: International Journal of Population Data Science
• Online Access: https://ijpds.org/article/view/1586

Introduction Monash University’s health researchers are at the forefront of Health, Epidemiological and Translational research. Powered by research funding of over $69 million per year, Monash encompasses 13+ registries, 44+ clinical trials and 47+ cohort studies underpinned by complex multimodal, large and often sensitive datasets. Many of these research activities are occurring in isolation. Opportunities exist to better deliver higher impact research at scale through capacity building in data sharing. Objectives and Approach We have designed this session to demonstrate how significant investment in health data platform infrastructure by a University, can support best practice in data linkage and health research. Results Content will include: • An overview of Helix – people as a platform, research stakeholders, and key capabilities. • Institutional data governance and sharing capabilities – linking two or more researcher held datasets exampled by a use-case of linking biobank data to a clinical registry dataset. • Monash Helix data linkage working group – established to develop a community of practice to advance data linkage capabilities across Monash with a focus on: knowledge sharing; ethics, governance and data security; analytic training; and improved access to external administrative datasets. • Secure eResearch Platform (SeRP) – developed by Swansea University who have partnered with Monash University to bring their best practice framework and technologies in managing sensitive health data to Monash researchers and their national and international collaborators. • Future directions - participation in defining the strategic priorities of the Health Studies National Data Asset Program by creating distributed data infrastructure capability to develop, share and link FAIR data collections from the government, research and health care sectors. Conclusion/Implications The session will facilitate discussions on how we can build on these activities, both nationally and internationally, to develop a community of practice around knowledge sharing and best practice in data linkage.