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Australian National Data Service
Webinar #4 – patient views on data sharing
Anne McKenzie AM
November 1st 2017
Supporting consumer involvement in WA
• Universities
• Medical Research
Institutes
• Tertiary Hospitals
• Private Health
P...
Our services
• Advocacy and support
• Community links & networks
• An evidence base
• Methods for involvement
• Website an...
Changing landscape: 1998 -2005
This is big
brother in
action!!
People don’t know
their information is
collected & used for...
In 2015/16 ……
Concerns:
“If a researcher uses out data he or she is under a moral obligation to
help that data improve our...
Supporting awareness
• Since 2007 approx. 400 community members have attended
training workshops that include topic on lin...
What’s needed now
• Greater community awareness of the benefits of data sharing
• More community dialogue around the secon...
Contact details:
ipir@telethonkids.org.au
www.involvingpeopleinresearch.org.au
Thank you
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Anne McKenzie

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Presentation by Anne McKenzie AM, WA Consumer and Community Health Research Network, on 1 November 2017, to the 'Patient views on data sharing' ANDS webinar.

Recordings, slides, transcripts, links for all health and medical webinars are at: http://www.ands.org.au/working-with-data/sensitive-data/medical-and-health/webinars-health-and-medical

Published in: Health & Medicine
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Anne McKenzie

  1. 1. Australian National Data Service Webinar #4 – patient views on data sharing Anne McKenzie AM November 1st 2017
  2. 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. 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. 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. 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. 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. 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. 8. Contact details: ipir@telethonkids.org.au www.involvingpeopleinresearch.org.au Thank you

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