Actions Panel
Sydney: Sharing Health-y Data: Challenges and Solutions II
Date and time
Location
University of Technology Sydney
Dr Chau Chak Wing Building 14-28 Ultimo Rd Sydney, NSW 2007 AustraliaDescription
Date: Wednesday 26th October 2016, 9.00am -12.30pm
Location: Dr Chau Chak Wing Building, Ultimo Rd, University of Technology Sydney
Cohosted by: Australian National Data Service (ANDS) and Intersect
Cost: It is FREE to attend, however, places are limited and registration is required
Following the success of the Sharing Health-y Data workshop in November 2015 at the University of Sydney we would like to announce a second 'Sharing Health-y Data' workshop coming to Sydney. Please be advised that the content will be similar to the first workshop in November 2015, however, some speakers will be different.
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 is often due 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!
At the end of this workshop you will know:
- 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.
You will hear from researchers and data managers about their experiences and advice for publishing and sharing health data. The workshop will also enable valuable discussion with your peers.
This seminar will be of interest to:
- 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
This seminar is hosted by the Australian National Data Service (ANDS) and Intersect.
Speakers include:
- Dr Jeff Christiansen, Intersect and med.data.edu.au
- Kate LeMay, ANDS
- Ailsa Langford, Australian New Zealand Clinical Trial Registry (ANZCTR)
- Dr Emma Heeley, Centre for Health Record Linkage (CHeReL)
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
Allied health data resources:
- Publishing Sensitive Data
- ANDS webinar: Clinical data disclosure: the five Ps with Iain Hrynaszkiewicz, Nature Publishing (90 second summary, 30 min full version)
- ANDS website for Medical and Health data
- Top 10 research data Things for medical and health
Organised by
The ARDC is working towards an integrated, coherent and reliable research system to deal with the various needs of data-intensive, cross-disciplinatry and global collaborative research.