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Brisbane - Sharing Health-y data - Challenges and solutions

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Event Name Brisbane - Sharing Health-y data - Challenges and solutions
Start Date 16th Mar 2016 1:30pm
End Date 16th Mar 2016 5:30pm
Duration 4 hours
Description

HISAands logo

Location:  Auditorium,Translational Research Institute,37 Kent Street, Wooloongabba, 4102
Cohosted by: Health Informatics Society of Australia (HISA) & Australian National Data Service (ANDS)

Speakers and presentations:

Dr Sarah Olesen,Senior Writer & Data Consultant, Biotext, and author of the ANDS Sensitive Data Guide.

What are health and sensitive data and why are they trickier to publish and share?

Additional materials around consent forms allowing sharing data

Dr Peter Croll, Cyber Security and Privacy Consultant

Privacy and legal framework

Melissa Hagan, Manager, Queensland Health Division, Queensland Health

Update on Legislation, Ethics and Governance for re-use of identifiable health and clinical data in the Qld public health sector

Dr Sarah Olesen, Senior Writer & Data Consultant, Biotext

Licencing health and sensitive data

Dr Xin-Yi Chua, Head of Informatics,QFAB@QCIF

RedCap: Data management tool for capturing and sharing clinical data

Conor Brophy, Chairperson, Royal Brisbane & Women's Hospital Human Research Ethics Committee

How to make your ethics proposal data friendly (sharing, re-use)

Larissa Briedis, Manager, Policy and Planning, National E-Health Transition Authority (NEHTA)

Sharing/accessing data through "My Health Record"

Trisha Johnston (Director) and Catherine Taylor (Principal Data Linkage Officer), Statistical Analysis and Linkage Unit, Statistical Services Branch. Queensland Department of Health

Queensland Data Linkage Framework

Kate LeMay, Senior Research Data Specialist. Australian National Data ServiceThe Guide to Publishing and Sharing Sensitive Data

Recorded speaker Iain Hrynaszkiewicz, Head of data and HSS Publishing, Open Research at Nature Publishing Group

Publishing Clinical Research Data: The 5 Ps

Research data from studies about people's health and wellbeing have not traditionally been published and shared as much as data from other disciplines. This if often sue to the potentially sensitive nature of these data and concerns about navigating legal (privacy) and ethical obligations.

However, the benefits for researchers, institutions and the general public of sharing these data are becoming more widely accepted and promoted. Sharing health data reduces participant burden, expediates treatment and responses to health events, saves research costs and recognises the efforts made to collect these valuable data. With planning and understanding, 'healthy' human data can often be safely shared with great success!

The aims of the workshop were to explore:

  • what health and sensitive data are
  • what legal and ethical issues you need to consider before publishing and sharing health data
  • how to plan for data sharing in research ethics applications and consent forms
  • how data may be confidentialised
  • how to licence human data for re-use
  • what's happening in local institutions.

This event was aimed at:

  • researchers who are considering publishing and sharing human data from health and other disciplines
  • researchers who want to re-use health data
  • research support staff
  • data managers
  • research ethics committee members

Examples of published health datasets:

Open access: Ford, J (2015) De-identified dataset of the PALS (Pregnancy and Lifestyle Study), a community based study of lifestyle on fertitlity and reproductivt outcome. University of South Australia.

Mediated Access: Mishra, G (2014) Australian Longitudinal Study on Women's Health. The University of Queensland Collection

Health data resources: