Consumer Reference Group
About the ICH Consumer Reference Group
Established at the beginning of 2021, the ICH Consumer Reference Group (CRG) is a vibrant and diverse means of ensuring patients, service users, carers and patient advocates are an integral component of everything we do.
With members across Australia meeting virtually every 6-8 weeks, the ICH CRG engages on all aspects of our health communication research, including communication in end-of-life care, clinical handovers, dialysis consent and shared decision making procedures and communication of diagnostic uncertainty.
As well as collaborating on established projects, the CRG’s core work includes:
- identifying communication issues that create risks for patient safety and quality of care;
- developing research proposals to address these issues;
- collecting and analysing data; and
- contributing to writing and circulating findings to the public.
For more information about the scope of the ICH CRG you can read our Terms of Reference here:
- ICH CRG Terms of Reference [PDF, 181kb]
Dr Mary Dahm
If you are a patient, service user, carer or patient advocate with a particular interest in communication in healthcare settings, we welcome applications to the CRG. We recommend you familiarise yourself with the ICH’s current and past projects and then contact the CRG Facilitator Dr Mary Dahm.
Current members of the ICH Consumer Reference Group include:
|Dr Ann Lawless||Dr Ann Lawless is a health consumer representative in Western Australia with experience as a health consumer rep in SA and rural NSW. She has an active and long term commitment in health advocacy and activism, with special interests in health communication (such as concordance and shared decision making), transcultural heath, health research, quality issues in health, and universal health care. She is interested in how diversity and diverse approaches to research engage participants, especially from those marginalised from health care.|
|Ms Sandy Thomson||Sandy Thomson is a health consultant specialising is preparing organisations for accreditation, and providing training in governance, risk management quality and safety. Sandy has a long term commitment to improving consumer engagement not only at the individual level through a focus on partnering and shared decision making but also at an organisation level to improve consumer influence in business decision making especially where direct and indirect impacts (positive and negative) for consumers are occurring through governance systems.|
|Phoebe Kingston||Phoebe’s a lived experience consultant, representative, trainer, speaker, group facilitator for the mental health sector and sessional academic for the School Of Allied Health, Curtin University. Her background roles include Board Director for Consumers of Mental Health WA and executive representation in the public health sector as vice chair, subcommittees chair, and project lead under the North Metropolitan Health Service (NMHS) Mental Health Community Advisory Council and a role on the Consumer Engagement Community Advisory Council (peak advisory body to the NMHS Board). Phoebe’s a subject matter expert (SME) for expert panels including WA Mental Health Commission projects such as the Peer Practice Expert Group. She’s a certified personal medicine coach and a national Peer Ambassador for Sane Australia.|
|Dr Brian Osborne||Dr Brian Osborne has 12 years experience as a Consumer Advisor with NSW Health (Ministry of Health, Clinical Excellence Commission, Emergency Care Institute), Consumers Health Forum, Health Consumers NSW and was Chair of the Hornsby Ku-Ring-Gai Consumer Participation Committee. He is a retired biochemist with 37 years professional experience and a many years of volunteering in education, policing, senior’s affairs as well as health. He has held senior industry and academic appointments in plant and food science in the UK and Australia.|
|Maureen Williams||Maureen is a patient advocate with more than 40 years experience in the health system. She lives with Addisons disease and has been admitted to hospital well over 100 times. She is a passionate advocate for the patient voice and has been involved with many patient groups, medical colleges and universities. She has worked for the past 8 years with the Australasian College for Emergency Medicine on policy and training programmes, has been involved with medical research with Macquarie, Sydney, Melbourne and Monash Universities and is currently involved in research with ANU. She is on a committee for the Australian Diagnostic Error conferences and has worked with ISQUA ( International Society for Quality in Healthcare). Maureen has a background as a professional singer and has an extensive background in voice therapy. She has a postgrad. Diploma in counselling and communication and has just completed a Masters of Public Health.|
|Janney Wale||Dr Janney Wale lives in Melbourne. She grew up in country Victoria and has previously lived in rural and urban Western Australia and England. Janney was working as a biomedical researcher before she became a consumer advocate, as a result of her own health issues. Her particular interests are communication in healthcare, informed consent, diagnosis and prognosis, evidence-based healthcare, healthcare standards and quality of care, use of electronic medical records and consumer involvement in health technology assessment.|
|Marg Fagan||Marg Fagan’s career has spanned 40 years in the health care industry, most recently as a senior executive of a private hospital, her clinical and business expertise providing a unique perspective. Marg has also completed a Graduate Certificate in Health Management. Marg was, and remains, passionate about health care during her career, bringing professionalism, empathy, caring and fairness to the role and saw, as a natural step, to become a consumer advocate to continue to assist in improving the quality of healthcare for all. Marg is a member of several consumer organisations including Consumer Health Forum, Health Consumers NSW, in addition as a consumer advisor at Royal North Shore Hospital in Sydney, and several committees at the Agency for Clinical Innovation. Research is of great interest to Marg as she has been involved in the care of her sister who has an auto immune disease where research into treatment has improved her quality of life. Another research project Marg is currently involved in is Patient Reported Measures NHMRC Partnership Project with NSW Health. Marg is currently learning French and is looking forward to immersing herself in the all things of French culture when she next travels to France.|
Laila became an accidental advocate for her father during his 10-year battle with severe illness and witnessing the impact of the health system response. Her focus has since been to facilitate and embed the immense value and knowledge that patients and their families contribute to their own personal healthcare – for better, safer health outcomes – into health systems. A Board member of ACI and CEC, a Co-Chair of the ACI and CEC Consumer Council, and an Honorary Associate with The University of Sydney, she is also employed by SLHD as an independent consumer representative involved in the development and evaluation of policies and processes within SLHD and across NSW Health.
|Dr Penelope Bergen||
Dr Penelope Bergen is a classical violinist by trade. She worked with orchestras and chamber music groups in Australia and the Netherlands, where she lived for a decade. Penelope also has a background in social research and two decades’ experience in print and broadcast media. She has a PhD in applied sociology, researching the intersection of government policies, governance structures, geographical isolation and individuals’ values in the development of the culture of non-Indigenous workers in remote Aboriginal communities in Central Australia. A longstanding interest in community development enhances her research interests. She has worked with the Consumers Health Forum of Australia as a policy advisor in Quality Use of Medicines. She is currently working as a senior researcher in mental health with the federal Department of Defence.
Brian brings a diverse and complementary set of skills and competencies built up over more than 30 years fostering the Consumer in the Health, For Purpose (Social/Community Services) and For Profit Sectors. He has ‘lived experience’ of the health care system as well as experience as a Consumer Representative member of advisory committees in Public/Private health care settings and with NSW Health. Additionally, Brian has a background in marketing/communications, research ethics and grant writing. Brian is passionate about championing the consumer voice in co-design that drives a level of understanding of their health and care journey needs, experiences and concerns such that they are understood and can be brought to life in person-centred value-based care settings.