Our links

Collaborations with consumers, community members, research organisations, government and non-government organisations have been a fundamental part of the Program since it began. Many people have contributed to the development of the Program at a local, national and international level since 1998. Champions and contributors include people from academia, research organisations, health professions, government agencies, non-government agencies, consumer and community organisations and past and present members of the Consumer and Community Advisory Councils.

We also acknowledge that there are many other consumers and community members who have contributed to the Program by serving on a wide range of committees at the School and the Institute. We apologise if there are any omissions.

Below we acknowledge all of our:

 

Collaborators

Early collaborations, particularly with the Health Consumer’s Council WA, Consumers Health Forum Australia, the WA Department of Health and the NHMRC have continued and strengthened since 1998. With the expansion of activities and networks there was a steady increase in recognition of the Program. This has resulted in increased opportunities for collaborations with consumer organisations, universities and research organisations at state, national and international levels. The following descriptions of the Program’s major collaborations are organised in chronological order of initial involvement.

INVOLVE

The Program’s Consumer and Community Strategic Plan (2004) and Participation Policy (2005) were, in part, informed by the work of INVOLVE in England. The INVOLVE support unit was established in 1996 and is part of, and funded by, the National Institute for Health Research in the UK to support active public involvement in National Health Service, public health and social care research. Ongoing relationships with INVOLVE staff were first established via email in 2004 and then through attendance by Program staff at INVOLVE’s bi-annual national conferences. Guidance and support for the Program’s activities and direction was provided by former and current INVOLVE staff Helen Hayes, Philippa Yeeles and Maryrose Tarpey. INVOLVE staff have also facilitated introductions to a wide range of invaluable contacts throughout the UK as well as Denmark, Canada and the United States of America.

TwoCan Associates

An introduction by INVOLVE staff in 2006 to Bec Hanley, founding Director of INVOLVE and now Co-director of TwoCan Associates, has resulted in an ongoing collaboration between Bec Hanley and the Program. Her contribution in the form of mentoring, advice and support has had a significant impact on the Program. In 2007 Bec Hanley co-authored the Program’s first publication entitled Consumer and Community Participation: a Practical Guide for Health and Medical Research Organisations.

In 2008 she was involved in planning for the Program’s inaugural Involving People in Research Symposium and was a keynote speaker. In 2009 she worked with the Consumer Advocate to develop and facilitate training workshops for researchers on implementing consumer and community involvement. She was involved in developing the Program’s resources and website and worked with Program staff on a further publication, entitled Planning for Consumer and Community Participation: a guide for health and medical researchers, published in December 2014.

The School of Health and Related Research, Sheffield University

Introductions by INVOLVE staff to Rosemary Barber and Jill Thompson from Sheffield University provided additional international links for the Program. In 2008, Rosemary Barber and Jill Thompson were plenary speakers at the Involving People in Research Symposium, organised by Program staff and collaborators. The Consumer Advocate was invited to attend a researcher and consumer meeting in 2010 at Sheffield University to make a presentation about the developing activities of the Program. Ongoing contact has been maintained and opportunities for Jill Thompson to be involved in evaluation of the Program are being explored.

Kulunga Aboriginal Research Development Unit

The Kulunga Aboriginal Research Development Unit, formerly the Kulunga Research Network, was formed in 1999 and is dedicated to improving the health and wellbeing of Aboriginal children, families and communities while enabling Aboriginal people to conduct research. The Program has worked closely with many Aboriginal researchers associated with Kulunga since 2004, exchanging knowledge, experiences and support to foster greater involvement by all Australians in the research effort. The Program has been supported and encouraged by good practice examples of community consultation and involvement undertaken by Kulunga.

Cancer Voices NSW and Cancer Council NSW

Networks established via Consumers Health Forum of Australia, initially with Cancer Voices NSW and then with Cancer Council NSW, have resulted in a range of collaborations with the Program. At the Involving People in Research Symposium in 2008, good practice consumer involvement undertaken by these two organisations was highlighted as a showcase project. In 2009, invited attendance by Program staff at a ‘community conversation’ facilitated by Cancer Council NSW on consumer priorities for research informed the development of involvement methods by the Program. The Community Conversations have become a major component of the work of the Program. In 2014 a formal agreement was developed between Cancer Council NSW and UWA for Program staff to provide a consultancy service for the development of new modules for their consumer training. 

Swansea University

In 2009 the Consumer Advocate was invited by Professor Ronan Lyons to make a presentation about the Program to a research network meeting associated with the Health Information Research Unit at Swansea University in Wales. During a subsequent visit to Perth by Professor David Ford and Dr Kerina Jones in 2010, there were further discussions about the Program and the possibility of establishing a Consumer Council at the Health Information Research Unit, based on the model developed by the Program. The Consumer Advocate provided advice and support during the establishment of a Consumer Council and has since attended Council meetings in 2012 and 2013 at the Health Information Research Unit.

Australian Primary Health Care Research Institute

Michele Kosky, former Executive Director of the Health Consumers’ Council WA, highlighted the Program’s training workshops to the Australian Primary Health Care Research Institute Board in 2010. Their commitment to support consumer and community involvement in primary health care research has resulted in an ongoing collaboration. This has included researchers attending a training workshop at the School in 2010 and Program staff facilitating bespoke workshops at the Australian National University in Canberra for researchers who receive Australian Primary Health Care Research Institute funding. Over 50 researchers have now attended workshops between 2010 - 2014. Evaluation of the training will take place in 2015 and a report will be produced.

National Breast Cancer Foundation

Program staff and Dr Alison Butt, Director of Research Investment at the National Breast Cancer Foundation, developed a relationship following an introduction by Professor Moira Clay (former Acting Director of the Institute) in 2012. Program staff also provided advice on consumer involvement in a breast cancer research project funded by the Foundation that was conducted at the School. In 2013 Program staff facilitated a bespoke training course in Melbourne for researchers and consumers on implementing consumer involvement in research funded by the Foundation.

Westmead International Network for Neonatal Education and Research

Professor William Tarnow-Mordi, Foundation Director of Westmead International Network for Neonatal Education and Research at the University of Sydney’s Clinical Trials Unit made contact with the Program in 2011. Conversations about the work of the Program led to Program staff being invited to present at a conference in May 2012 at the Westmead Hospital in Sydney and at a parent training workshop in October 2012. A project led by Professor Tarnow-Mordi and funded by the NHMRC included a Program staff member as an associate investigator.

Miracle Babies Foundation

The Program established links with Miracle Babies Foundation, an organisation that supports premature and sick newborns, their families and the hospitals that care for them, when presenting at Westmead Hospital’s Neonatal Conference in 2012. The co-founders of Miracle Babies, Melinda Cruz and Kylie Pussell actively support the work of the Program and have made contributions to training workshops (as consumer presenters) and Program publications.

Better Treatments 4 Kids and Centre for Kidney Research

In 2013, a meeting between Program staff and Jonathan Craig, Professor of Clinical Epidemiology at the School of Public Health and Associate Dean (Research), Sydney Medical School, led to an ongoing collaboration which included an invitation to join a team of researchers and community organisations developing a grant application for a Centre of Research Excellence, in the area of kidney research, funded by the NHMRC. Although unsuccessful in securing funding, Program staff have had further involvement with this group as they continue to pursue opportunities for consumer-driven research. Professor Craig was instrumental in enabling two training workshops, facilitated by Program staff, to be held in 2014 in Sydney for researchers and consumers involved in the research activities of the Better Treatment 4 Kids Research Network. The Network is a collaboration of research clinicians based in NSW children’s hospitals.

 

Champions and Collaborators

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The following people have had significant involvement with the Program and are listed in chronological order of their initial involvement, with their current titles and affiliations.

Researchers and members of government and non-government organisations 

Local

Emeritus Professor D’Arcy Holman AM,
School of Population Health, UWA
 
 
 
Professor Fiona Stanley AC,
Telethon Kids Institute
 
Professor Carol Bower,
Telethon Kids Institute
 
 
 
Professor Steve Zubrick,
Telethon Kids Institute
 
Professor Matthew Knuiman,
School of Population Health, UWA
 
 
 
Professor Nick de Klerk,
Telethon Kids Institute
 
Emeritus Professor Michael Hobbs,
School of Population Health, UWA
 
 
 
Dr Garth Kendall,
Curtin University
 
Dr David Lawrence,
Telethon Kids Institute
 
 
 
Professor Max Bulsara,
University of Notre Dame Australia
 
Professor James Semmens,
Curtin University
 
 
 
Dr Emma Glasson,
Telethon Kids Institute
 
Ms Diana Rosman,
Data Linkage Branch, WA Department of Health
 
 
 
Professor John Finlay-Jones,
Edith Cowan University
 
Professor David Preen,
School of Population Health, UWA
 
 
 
Dr Jan Payne,
Telethon Kids Institute
 
Professor Sven Silburn,
Menzies School of Health Research
 
 
 
 Ms Heather D’Antoine,
Menzies School of Health Research
 
Ms Heather O’Malley,
WA Department of Health
 
 
 
Ms Leanne Scott,
Telethon Kids Institute
 
Ms Elizabeth Chester,
Telethon Kids Institute
 
 
 
Clinical Associate Professor Deborah Lehmann AO,
Telethon Kids Institute
 
Dr Helen Leonard,
Telethon Kids Institute
 
 
 
Clinical Professor Jon Emery,
UWA and the University of Melbourne
 
Associate Professor Caroline Bulsara,
University of Notre Dame Australia
 
 
 
Associate Professor Frank Sanfilippo,
School of Population Health, UWA
 
Professor Angus Cook,
School of Population Health, UWA
 
 
 
Professor Jane Heyworth,
School of Population Health, UWA
 
Assistant Professor Anna Kemp,
School of Population Health, UWA
 
 
 
Ms Margaret Mathews,
School of Population Health, UWA
 
Dr Melissa O’Donnell,
Telethon Kids Institute
 
 
 
Professor Colleen Hayward AM,
Edith Cowan University
 
Dr Daniel McAullay,
Dan McAullay Consulting
 
 
 
Assistant Professor Peter Franklin,
School of Population Health, UWA
 
Professor Peter Sly,
Queensland Children’s Medical Research
Institute, The University of Queensland
 
 
 
Professor Ian Puddey,
Faculty of Medicine, Dentistry and Health
Sciences, UWA
 
Professor Elizabeth Geelhoed,
School of Population Health, UWA
 
 
 
Adjunct Associate Professor Rachael Moorin,
School of Population Health, UWA
 
Mr Glenn Pearson,
Telethon Kids Institute
 
 
 
Dr Hannah Moore,
Telethon Kids Institute
 
Ms Victoria Gray,
School of Population Health, UWA
 
 
 
Dr Merran Smith,
Population Health Research Network
 
Dr Felicity Flack,
Population Health Research Network
 
 
 
Dr Michael Wright,
Telethon Kids Institute and Curtin University
 
Dr Rebecca Glauert,
Telethon Kids Institute
 
 
 
Professor Moira Clay,
MC Consulting Perth
 
Ms Jenny Mountain,
School of Population Health, UWA
 
 
 
Professor Colleen Fisher,
School of Population Health, UWA
 
Associate Professor Rosemary Saunders,
School of Population Health, UWA
 
 
 
Professor Jonathan Carapetis,
Telethon Kids Institute
 
Associate Professor Tom Briffa,
School of Population Health, UWA
 
 
 
Ms Cecily Strange,
School of Population Health, UWA
 
Professor John Challis,
School of Population Health, UWA
 
 
 
 

 

National

Professor Warwick Anderson AM,
National Health and Medical Research Council    
 
 
 
Mr Glen Rees AM,
Alzheimer’s Australia
 
Mr Mick Gooda,
Aboriginal and Torres Strait Islander Social
Justice Commissioner
 
 
 
Ms Geraldine McDonald,
Telehealth Strategy and Development,
Department of Health Victoria
 
Dr Michelle Banfield,
Australian Primary Health Care Research
Institute, Australian National University
 
 
 
Dr Robert Wells,
Australian National University
and Sax Institute
 
Mr Chris Rathbone,
South Australia-Northern Territory Datalink
 
 
 
Professor William Tarnow-Mordi,
The University of Sydney
 
Dr Lesley Russell,
Australian Primary Health Care Research
Institute, Australian National University
 
 
 
Associate Professor Terry Findlay,
Australian Primary Health Care Research Institute,
Australian National University
 
Professor Jonathan Craig,
The University of Sydney
 
 
 
Dr Alison Butt,
National Breast Cancer Foundation
 
Ms Pam Smith,
Flinders University, South Australia
 
 
 
Dr Libby Topp,
Cancer Council New South Wales
 
Ms Sally Crossing AM,
Cancer Voices New South Wales
 
 
 
Ms Helen Hopkins,
National Rural Health Alliance, Canberra
 
Mr John Stubbs,
CanSpeak Australia
 
 
 
Ms Carol Bennett,
Alzheimer’s Australia
 
Ms Liza Newby,
Health Issues Centre
 
 
 
Ms Melinda Cruz,
Miracle Babies Foundation, New South Wales
 
Ms Kylie Pussell,
Miracle Babies Foundation, New South
Wales
 
 
 
Ms Darlene Cox,
Health Care Consumers Association of the ACT,
Canberra
 
Ms Deborah Smith,
Community Council for Australia, Canberra
 
 
 
 

 

International

Dr Rosemary Barber,
School of Health and Related Research,            
University of Sheffield, UK
 
 
 
Dr Jill Thompson,
School of Nursing and Midwifery, University
of Sheffield, UK
 
Professor Ronan Lyons,
Health Information Research Unit,
Swansea University, UK
 
 
 
Professor David Ford,
Health Information Research Unit,
Swansea University, UK
 
Dr Kerina Jones,
Health Information Research Unit,
Swansea University, UK
 
 
 
 

 

Consumers and community members

Local

Ms Michele Kosky AM,
Director of MMK Consulting
 
 
 
Ms Ann White,
Mental health consumer advocate
 
Ms Karen Carey,
Consumer advocate and Chair of the NHMRC    
Community and Consumer Advisory Group
 
 
 
Mr Matthew Hunt,
WA Department of Local Government and 
Communities
 
Ms Ginger Gordy,
Mental health consumer advocate
 
 
 
Ms Jackie Softly,
Down Syndrome Australia
 
Mrs Barbara Daniels,
Consumer advocate
 
 
 
Mr Ben Horgan,
Perth North Metro Medicare Local
 
Ms Margaret Cook,
Mental health consumer advocate
 
 
 
Ms Dot Henry,
Aboriginal community member
 
Ms Margaret Culbong,
Aboriginal community member
 
 
 
Ms Kathie McLure,
Health Consumers’ Council WA
 
Ms Rosemary Caithness,
Health Consumers’ Council WA
 
 
 
Ms Maxine Drake,
Consumer advocate
 
Ms Lorraine Powell,
Mental health consumer advocate
 
 
 
Mr Mitch Messer,
Consumer advocate
 
Ms Stephanie Newell,
Health consumer advocate
 
 
 
Ms Julie Ireland,
Down Syndrome WA
 
Mr Bill Fox,
Community member
 
 
 
Dr Rachel Skoss,
Disability advocate
 
Mr Ian Hill,
Community member
 
 
 
Ms Sara Elliot,
Mental health consumer advocate
 

 

International

Ms Bec Hanley,
Co-director of TwoCan Associates UK
 
 
 
 
Ms Helen Hayes,
Knowledge and Communications Manager,
INVOLVE Coordinating Centre England
 
Ms Philippa Yeeles,
Director of Involvement and Engagement,        
National Institute for Health Research
Central Commissioning Facility UK
 
 
 
Ms Maryrose Tarpey,
Assistant Director, INVOLVE Coordinating
Centre England
 
 

 

Past and present Council members

The Consumer and Community Advisory Councils at the School and the Institute were established in 2006. All members below are listed in alphabetical order by the first name.

Andrew Markovs

Angela Rate

Anna Kemp

Anne Atkinson

Anne Cordingley

Barbara Daniels

Beatriz Cuestra-Briand    

Belinda Frank

Ben Horgan

Bill Fox

Bronwyn Rose

Caitlin Green

Caroline Rugdee

Catherine Gangell

Catherine Searle

Cecily Strange

Charlie Rook

Cheryl Rugdee

Colleen Fisher

D’Arcy Holman

David Lawrence

David Preen

Dot Henry

Elizabeth Chester

Elizabeth Geelhoed    

Eric Leotta

Fiona Smith

Fiona Stanley

Frank Prokop

Frank Sanfilippo

Garth Kendall

Georgia Banton

Glenn Pearson

Heather Jones

Helena Iredell

Hilary Rumley

Ian Hill

Jan Adams

Jan Payne

Janet Wale

Jennifer Hafekost

Jenny Downs

John Finlay-Jones

Judith Finn

Julie Ireland

Kathie McLure

Kristina Johns

Liz Buckton

Lorraine Powell

Louise Stewart

Margaret Culbong

Margaret Wood

Mary Kepert

Matthew Knuiman

Melanie Hawkes

Michelle Atkinson de Garis   

Mike Garlepp

Mitch Messer

Moira Clay

Phil Weinstein

Pip Brennan

Rachel Skoss

Rae Young

Rebecca Lubansky

Robyn Coleman

Rosemary Saunders   

Ruth Simms

Sandy McKeirnan

Sara Elliot

Sarah French

Sarra Jamieson

Siobhan Brennan

Valerie Mather

Vivien Kemp

Wendy Wright