This document summarizes a webinar about patient views on data sharing. It discusses the Australian National Data Service and an organization called Involving People in Research that was established in 1998 to support community involvement in health research. The organization provides advocacy, community links, evidence and methods to support involvement of community members in research. While early concerns focused on privacy and informed consent, more recent views show that people are open to data sharing if researchers communicate results and improve lives. Greater awareness and involvement of community members is still needed.

1. Australian National Data Service
Webinar #4 – patient views on data sharing
Anne McKenzie AM
November 1st 2017

2. Supporting consumer involvement in WA
• Universities
• Medical Research
Institutes
• Tertiary Hospitals
• Private Health
Providers
• WA Health
• Office of Science
Founding partners
• Established in 1998 at UWA and Telethon
Kids Institute in response to community
concerns about linked data research
• Aim is to support the consumer
/community ‘voice’ in decision-making
about health research priorities, policies
and practices
• Lotterywest funding in 2016 enabled
expansion across the WA Health
Translation Network

3. Our services
• Advocacy and support
• Community links & networks
• An evidence base
• Methods for involvement
• Website and resources
• Teaching and training for
researchers and community
members
www.involvingpeopleinresearch.org.au
1800+ members currently registered

4. Changing landscape: 1998 -2005
This is big
brother in
action!!
People don’t know
their information is
collected & used for
research
What about
people’s privacy?
De-identified
data can be re-
identified
WA public is not
informed about
data linkage
People aren’t
told about the
results
The data could
be hacked

5. In 2015/16 ……
Concerns:
“If a researcher uses out data he or she is under a moral obligation to
help that data improve our lives”
“Researchers are using data linkage and still never talk to a patient,
carer or an actual human being”
“Not sure data linkage process meets the ‘gold standard’ for
transparency and accountability”
Benefits:
“health data has proven to be secure from hacking to date”
“People are very relaxed about sharing intimate data on insecure sites”
“Why don’t we use information we have to drive good policy rather than
allowing politicians / vested interests to hijack debate?”
“Why aren’t governments facilitating research with information they
already have”

6. Supporting awareness
• Since 2007 approx. 400 community members have attended
training workshops that include topic on linked data capability
in WA – always positive responses!
• Numerous community members currently serve on research
projects that use linked data
• Community members have had input into submissions on the
use of linked data for research for state and federal
government submissions
• 2017 - 25 senior consumers and community members
involved in setting community priorities for future research
using linked data

7. What’s needed now
• Greater community awareness of the benefits of data sharing
• More community dialogue around the secondary use of data
• Researchers working with consumers and community
members to address concerns
• Greater involvement of consumer and community members
in all research i.e what is researched, how its conducted and
the translation of findings into policy and practice
Its my story …….
“I know the data is anonymised but I want you to remember
that its my story – its about me, my life, my family
Researchers should honour that by making information
available about what the data is used for and what is found”

8. Contact details:
ipir@telethonkids.org.au
www.involvingpeopleinresearch.org.au
Thank you