Community Engagement Consultant and Advisor
Anne joined Telethon Kids Institute in 2004 as the Consumer Advocate, where she developed and implemented an internationally recognised joint program with the University of Western Australia's School of Population Health to increase consumer and community involvement in health research.
Anne is now the Manager of Community Engagement at Telethon Kids. She was previously Head of the Consumer and Community Health Research Network where she established a Strategic Framework and Program of Work for consumer and community involvement across the WA Health Translation Network’s partner organisations, including Telethon Kids.
Anne is a senior consumer representative for Consumers Health Forum of Australia and former Chair of Health Consumers Council WA. She currently serves on several key state and national health committees.
Anne previously worked for WA Health where she established the role of Parent Advocate at Princess Margaret Hospital for Children.
Anne was made an Honorary Life Member of the Health Consumers Council WA in 2012 in recognition of her outstanding service to the organisation. In January 2015, she was appointed as a Member of the Order of Australia for significant service to community health through consumer advocacy roles and strategic policy research and development.
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Publications
November 2022
Victim-Survivors, Family and Domestic Violence Service Providers and Support People: Identification of Priority Issues for Research and Translation into Policy and Practice
The rates of family and domestic violence (FDV) remain significantly high in Australia, and to address this, we need to ensure that victim-survivors of FDV are at the centre of these efforts. The research objective was to determine priority issues for future research and policy in FDV as determined by victim-survivors of FDV, providers of FDV services and informal support people.
Published research Human Development and Community WellbeingApril 2023Priority setting for children and young people with chronic conditions and disabilities
The aim of this project was to identify the top 10 priorities for childhood chronic conditions and disability (CCD) research from the perspectives of children and young people with lived experience, their parents and caregivers and the professionals who work with them.
Published research Diabetes and Obesity Youth Mental Health Early Neurodevelopment and Mental Health Child disabilityMarch 2023Core protocol for the adaptive Platform Trial In COVID-19 Vaccine priming and BOOsting (PICOBOO)
The need for coronavirus 2019 (COVID-19) vaccination in different age groups and populations is a subject of great uncertainty and an ongoing global debate. Critical knowledge gaps regarding COVID-19 vaccination include the duration of protection offered by different priming and booster vaccination regimens in different populations, including homologous or heterologous schedules.
Published research Immunisation Infectious Diseases Infectious Disease Implementation Research Infectious Diseases Epidemiology Vaccine Trials Group Subsite: Wesfarmers Centre of Vaccines and Infectious Diseases COVID-19March 2023BEAT CF pulmonary exacerbations core protocol for evaluating the management of pulmonary exacerbations in people with cystic fibrosis
Cystic fibrosis (CF) is a rare, inherited, life-limiting condition predominantly affecting the lungs, for which there is no cure. The disease is characterized by recurrent pulmonary exacerbations (PEx), which are thought to drive progressive lung damage. Management of these episodes is complex and generally involves multiple interventions targeting different aspects of disease. The emergence of innovative trials and use of Bayesian statistical methods has created renewed opportunities for studying heterogeneous populations in rare diseases.
Cystic Fibrosis Published research Infectious Disease Implementation Research P4 Respiratory Health for Kids Subsite: Walyan BREATHMarch 2023Identifying the asthma research priorities of people with asthma, their carers and other stakeholders
People living with asthma, their carers, clinicians and policymakers are the end-users of research and need research that address their individual healthcare needs. We aimed to understand the research priorities of end-users of asthma research.
Asthma Published researchMarch 2023Development of the Consumer Involvement & Engagement Toolkit: a digital resource to build capacity for undertaking patient-centred clinical trials in Australia
This paper describes the novel approach to developing a toolkit to support meaningful consumer involvement in clinical trials in Australia to help guide others in considering the development of similar resources.The toolkit aims to support greater consumer involvement in shaping how clinical research is prioritised, designed and conducted. Type of program or service: A working group of researchers, research organisations and consumers was established to co-develop the Consumer Involvement and Engagement Toolkit (the 'Toolkit'), a digital resource to guide researchers and organisations regarding consumer involvement in clinical trials.
Published researchFebruary 2022A snapshot of consumer engagement in clinical trials in Australia: results of a national survey of clinical trial networks and research organisations
Little is known about the extent, perceptions or experiences of consumers involved in clinical trials across Australia. The purpose of this National study was to better understand the activity and perceptions of clinical trial networks (CTNs), research co-ordinating centres and their consumers, around consumer involvement in clinical trials.
Published researchJanuary 2022Perspectives of patients, family members, health professionals and the public on the impact of COVID-19 on mental health
The coronavirus (COVID-19) pandemic has seen a global surge in anxiety, depression, post-traumatic stress disorder (PTSD), and stress. Aims: This study aimed to describe the perspectives of patients with COVID-19, their family, health professionals, and the general public on the impact of COVID-19 on mental health.
Published research COVID-19December 2021Pediatric and child health nursing: A three-phase research priority setting study in Western Australia
Priority settings are important to plan and direct future research. The aim of this study was to identify the top ten pediatric and child health nursing research priorities from the perspectives of consumers, community, and healthcare professionals in Western Australia.
Published researchNovember 2021Revision of the Australian guidelines to reduce health risks from drinking alcohol
The Australian guidelines to reduce health risks from drinking alcohol were released in 2020 by the National Health and Medical Research Council. Based on the latest evidence, the guidelines provide advice on how to keep the risk of harm from alcohol low.
Published researchFebruary 2021DETECT Schools Study Protocol: A Prospective Observational Cohort Surveillance Study Investigating the Impact of COVID-19 in Western Australian Schools
Amidst the evolving COVID-19 pandemic, understanding the transmission dynamics of the SARS-CoV-2 virus is key to providing peace of mind for the community and informing policy-making decisions. While available data suggest that school-aged children are not significant spreaders of SARS-CoV-2, the possibility of transmission in schools remains an ongoing concern, especially among an aging teaching workforce. Even in low-prevalence settings, communities must balance the potential risk of transmission with the need for students' ongoing education.
Published research Academic Biostatistics Influenza Infectious Diseases Human Development and Community Wellbeing Subsite: Wesfarmers Centre of Vaccines and Infectious Diseases Healthy Skin and ARF Prevention Child Physical Activity, Health and Development Social and Emotional Wellbeing of Aboriginal Young People Geospatial Health and DevelopmentDecember 2020Community Priority setting for Fetal Alcohol Spectrum Disorder Research in Australia
Introduction Fetal Alcohol Spectrum Disorder (FASD) is a neurodevelopmental disorder caused by prenatal alcohol exposure (PAE). FASD research is a rapidly growing field that crosses multiple disciplines. To ensure research is relevant and meaningful for people living with FASD, their families, and the broader public there is a need to engage community members in setting priorities for research.
Fetal Alcohol Spectrum Disorder (FASD) Published research Alcohol and Pregnancy and FASD ResearchDecember 2020Facing the Ethical Challenges: Consumer Involvement in COVID-19 Pandemic Research
Consumer involvement in clinical research is an essential component of a comprehensive response during emergent health challenges. During the COVID-19 pandemic, the moderation of research policies and regulation to facilitate research may raise ethical issues.
Published research Infectious DiseasesJanuary 2016Consumer and community involvement in health and medical research: evaluation by online survey of Australian training workshops for researchers
The effect that attending a consumer and community participation had on their awareness of and attitudes to consumer and community involvement
Published researchMay 2015Two methods for engaging with the community in setting priorities for child health research: Who engages?
The Western Australian Telethon Kids Institute Participation Program employs a range of methods for fostering active involvement of community members in its...
Published research Human Development and Community WellbeingJuly 2014Fetal alcohol spectrum disorder: Development of consensus referral criteria for specialist diagnostic assessment in Australia
The use of standard methods to identify when to refer individuals who may have FASD for specialist assessment could help improve the identification of this...
Fetal Alcohol Spectrum Disorder (FASD) Published research Alcohol and Pregnancy and FASD ResearchOctober 2013Recommendations from a consensus development workshop on the diagnosis of fetal alcohol spectrum disorders in Australia.
Fetal alcohol spectrum disorders (FASD) are underdiagnosed in Australia, and health professionals have endorsed the need for national guidelines for diagnosis.
Fetal Alcohol Spectrum Disorder (FASD) Published research Alcohol and Pregnancy and FASD ResearchJuly 2013Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia
Australia's commitment to consumer and community participation in health and medical research has grown over the past decade.
Fetal Alcohol Spectrum Disorder (FASD) Published research Alcohol and Pregnancy and FASD ResearchJune 2013Collaborating with consumers: the key to achieving statutory notification for birth defects and cerebral palsy in Western Australia
The Western Australian Birth Defects Registry and the Western Australian Cerebral Palsy Register used multiple sources of voluntary notification without...
Cerebral Palsy Published research Alcohol and Pregnancy and FASD ResearchJanuary 2013A modified Delphi study of screening for fetal alcohol spectrum disorders in Australia
The aim of this study was to identify health professionals' perceptions about screening for fetal alcohol spectrum disorders (FASD) in Australia.
Fetal Alcohol Spectrum Disorder (FASD) Published research Alcohol and Pregnancy and FASD ResearchJanuary 2013Application of Population-Based Linked Data to the Study of Intellectual Disability and Autism
Data linkage is the bringing together of specific datasets from different sources using demographic information on individuals within a population.
Autism Spectrum Published research Intellectual Disability Alcohol and Pregnancy and FASD Research Child DisabilityOctober 2012Consensus diagnostic criteria for fetal alcohol spectrum disorders in Australia: A modified Delphi study
To evaluate health professionals' agreement with components of published diagnostic criteria for fetal alcohol spectrum disorders (FASD) in order to guide...
Fetal Alcohol Spectrum Disorder (FASD) Published research Alcohol and Pregnancy and FASD ResearchJune 2012Health professionals' perceptions about the adoption of existing guidelines for the diagnosis of fetal alcohol spectrum disorders in Australia
Despite the availability of five guidelines for the diagnosis of fetal alcohol spectrum disorders (FASD), there is no national endorsement for their use in...
Fetal Alcohol Spectrum Disorder (FASD) Published research Alcohol and Pregnancy and FASD ResearchOctober 2011Consumer stories about labelling
A consumer panel on medication safety and chronic illness in seniors (aged 65+ years)
Published researchMay 2011Collaborating with consumer and community representatives in health and medical research in Australia:
The objective of this tudy was to collaborate with consumer and community representatives in the Alcohol and Pregnancy Project from 2006-2008
Fetal Alcohol Spectrum Disorder (FASD) Published research Alcohol and Pregnancy and FASD Research