Health and Medical Research for the people, by the people, with the people

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Health and Medical Research for the people, by
the people, with the people

• Anne McKenzie
• September 2006

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Welcome

• My presentation will talk about the journey of
  the University the Research Institute in
  beginning to ensure our research is
• for the people, by the people, with the people

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The University of Western Australia School of
Population Health and The Telethon Institute
for Child Health Research
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• Small stable population - 1.9 million people
• Strong national and international research
  reputation
• State health data collections over 40 years
• A Data Linkage Unit - established in 1996
• Active health consumer movements
• State Health Consumers Council (WA) Inc
• National Consumers Health Forum of Australia

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National commitment to consumer and community
participation
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State commitment to consumer and community
participation
Positive tension has created positive results
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The University of Western Australia School of
Population Health Telethon Institute for Child
Health Research

• 1999 Consumer Research Liaison Officer appointed
  
• 2002 Capacity Building Grant awarded
• 2004 Strategic framework established
• Audit Workshops
• 2005 Policy developed and endorsed
• Steering group convened
• 2006 Advisory Councils established

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Phase One - Audit
Phase One - Staff Workshop
Evaluate
Phase One - Consumer Forum
Phase Two - Steering Group
Phase Two - Goals, visions indicators
Phase Three - Consumer Community Advisory Group
 
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University and Research InstituteFindings from
2004

• Staff Community Workshops - common issues
• Education and training
• Budget issues (payment for consumers)
• Better communication
• Audit - common issues
• Participation focussed mainly on results
  dissemination
• Lack of funds
• Education and training

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University and Research Institute Achievements
in 2005
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University and Research Institute Achievements
in 2005
Rett Syndrome
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Achievements in the community 2005

• Greater collaboration with Health Consumers
  Council
• Greater awareness in the community
• Consumer / Community groups involved in all
  aspects of planning and development of Consumer
  and Community Advisory Councils

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University, Research Institute Community
Achievements in 2006

• Increase in tutorials
• Social research application
• Birth Defects Register Workshops
• Community involvement in seniors research
  projects
• Consumer Community Advisory Councils

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Challenges for the future
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Thank You
Contact detailsanne.mckenzie_at_uwa.edu.au
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References

• The University of Western Australia School of
  Population Health
• http//www.dph.uwa.edu.au/
• The Telethon Institute for Child Health Research
• http//www.ichr.uwa.edu.au/
• The Health Consumers Council (WA) Inc
• http//www.hcc-wa.asn.au/
• Consumer Focus Collaboration (2000) Improving
  Health Services through Consumer Participation A
  Resource Guide for Consumers. Commonwealth of
  Australia
• The Little Purple Book of Community Rep-ing.
  Adelaide Central Community Health Service 2003
• Statement on Consumer community Participation
  in Health Medical Research
• http//www.nhmrc.gov.au/publications/synopses/r22s
  yn.htm