Written by Mark Brommeyer
On Wednesday 16 March 2016, the HISA Qld Branch held a half day symposium in conjunction with the Qld Cyber Infrastructure Foundation (QCIF) and the Australian National Data Service (ANDS) – Sharing Health-y Data: Challenges and Solutions. The meeting organisation was led by Dr Dominique Gorse (QCIF), Susan Smith, Dr Hugo Leroux and Mark Brommeyer (HISAQ) and Dr Sarah Olesen (ANDS), following the ANDS format for previous similar programs run elsewhere.
This event was very well attended with over 200 engaged participants posing challenging questions and with lively discussions continuing during the breaks.
The program brought together local and interstate experts who shared their practical insights on the many facets relating to the sharing of health and sensitive data, primarily in the context of research. There were three sessions to the event covering the legalities, ethics, governance, and managing, linking, confidentialising, reuse, licencing and publishing of personal health data in research.
The first session – Ethics, Legalities and Governance of shared health data was presented by Dr Sarah Olesen (ANDS) who provided an overview of what health and sensitive data are to establish a shared understanding, Dr Peter Croll (Cyber Security and Privacy Consultant) explained the relationship of the central attribute, safety, with privacy, security, confidentiality and trust, when protecting sensitive information, Mellisa Hagan (Health and Medical Research, QLD Health) then discussed initiatives to streamline appropriate processes for research and related purposes, Sarah Olesen (ANDS) also explained that all Australian data, including health data, intended for reuse should have a license and lastly Dr Conor Brophy provided the Ethics perspective as the Chair of both the RCWH and Mater Human Research Ethics Committees.
The second session – Managing Health Data so it can be shared and published was presented by Dr Xin-Yi Chua (QFAB) who gave an overview of the REDCap platform, a data management tool for capturing and sharing clinical data, Larissa Briedis (NEHTA) where she presented the My Health Record (MHR) system, which is a platform of interconnected systems and services that connect health systems and their users and Dr Trisha Johnston & Ms Catherine Taylor (NCRIS) elaborated on the capabilities of the Queensland Department of Health Data Linkage Service, which is funded by the National Collaborative Research Infrastructure Strategy and has been coordinated nationally by the Population Health Research Network since 2005.
Finally, Publishing Health Data was explored, with the five P’s highlighted: publishing, policy, peer review, privacy and pragmatism. The video by Iain Hrynaszkiewicz, Head of Data and HSS Publishing, can be seen here.
Lastly, a huge thank you to Dominique, Susan and Hugo from the HISA Queensland Branch for their invaluable assistance with the Organising Committee, of whom there are many, and to our great partners at ANDS. Sincere thanks also to those that assisted with the organisation of the event, our refreshment sponsors, QCIF, ANDS, HISA and the venue host, the Translation Research Institute at Wooloongabba.
For more information, visit the ANDS website and look for Guide to Publishing and Sharing Sensitive Data. When and how to publish sensitive data as openly and ethically as possible.