Community Advisory Group members (L to R): Louisa Di Pietro, Heather Renton, Margaret Sahhar, Janney Wale, Liat Watson

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Community involvement

The Community Advisory Group for Melbourne Genomics Health Alliance provides patient and community perspectives that inform how we are implementing genomics in Victoria.

Role of the Community Advisory Group

To ensure Victoria's patients can make informed decisions and gain maximum benefit from genomics, Melbourne Genomics recognises the vital need for community advice and co-deisgn. The Community Advisory Group was established within weeks of the Alliance's founding, in January 2014, making it one of the world's first community-based groups to advise a major genomics implementation initiative.

The Community Advisory Group:

  • advises the Executive Management Committee and Program Team on patient and community views so they are recognised and reflected in all aspects of the Alliance's work
  • makes recommendations on project planning and evaluation to ensure inclusion of patient perspectives and community engagement
  • advocates on behalf of the community for equity of access to genomic testing and information

Achievements

The Community Advisory Group won the ‘Outstanding Achievement by a Volunteer – Better Care Victoria Innovation Award’ in the 2017 Minister for Health Volunteer Awards, in recognition of the group's innovation in bringing community views and advice to the implementation of genomics in healthcare.

To date, the group's work has:

  • directly influenced the development of all community-facing materials
  • ensured that person-centred, co-productive healthcare remains fundamental to the Alliance's approach
  • actively influenced how the Alliance's work is evaluated
  • shaped policies, procedures and planning across the Alliance's program
  • directly contributed to the development of genomic information systems for Victoria
  • affirmed the fundamental role of patient experience in informing the practice of genomic medicine
  • directly influenced research on the perspectives and experiences of those undergoing genomic sequencing
  • played a vital role in supporting communication about genomics and the Alliance's work

In 2016, the Community Advisory Group compiled an interim report on its impact, which is available to download.

Membership

The Community Advisory Group meets on a quarterly basis, and currently comprises:

Chair

Jane Bell

Jane is a banking and finance lawyer and non-executive director with more than 30 years’ experience in leading law firms, financial services, corporate treasury operations and governance gained living in Melbourne, London, Toronto, San Francisco and Brisbane.

Jane currently serves as a Director of UCA Funds Management Limited, The Royal Melbourne Hospital (Melbourne Health), Biomedical Research Victoria  and member of the Audit Committee of The Salvation Army.  Jane is a former Board Member of  WorkSafe Victoria, Australian Red Cross (Qld), Monash Institute of Medical Research - Prince Henry’s Institute of Medical Research, Queensland Institute of Medical Research and the Victorian Women’s Housing Association, as well as Deputy Chair of Westernport Water Corporation.

Jane holds a Bachelor of Laws from the University of Melbourne, Bachelor of Economics from Monash University and a Master of Laws from Kings College, London, and is a Fellow of the Australian Institute of Company Directors.

Jane Bell
Members

Louisa Di Pietro

Louisa has orchestrated the success of the Genetic Support Network Victoria (GSNV) for a number of years - an organisation committed to the right of people to flourish, through access to the practical and pathways to the possible.

Louisa is an experienced researcher and educator with a particular interest in genetic counselling, testing and diagnosis of genetic and rare conditions, the psychosocial impact of diagnosis on families and individuals, and the delivery of ethical medical services in the genomics era. She teaches and supervises research within the University of Melbourne’s Masters in Genetic Counselling course.

Louisa has been a member of numerous professional boards and advisory groups, including the Chronic Illness Alliance Board and the Human Genetics Society of Australasia's Ethics and Social Issues Committee, and has been a policy advisor to the Consumers Health Forum Australia and the Health Issues Centre.

Louisa is a regular contributor to government policy review and development in the genetics health services area.

Louisa Di Pietro

Liat Watson

Liat is a past chair of the Royal Children’s Hospital Family Advisory Council, a Director of a national children’s charity, and an independent healthcare consumer consultant.

A mother of four children, one of whom died at the age of seven from a rare metabolic storage disorder, Liat is an active proponent of patient-centred care and consumer collaboration as a means of improving patient outcomes, decreasing healthcare costs, and positively impacting on public health.

Liat is an associate of the Australian Institute for Patient and Family Centred Care, and is a member of the Australian Commission for Safety and Quality in Healthcare’s Clinical Communications Advisory Group, the Victorian Surgical Consultative Council, the Family Faculty of the Victorian Paediatric Palliative Care Program, and sits on various committees at the RCH Melbourne as a consumer representative.

As a consumer advocate, Liat successfully achieved improved service funding and access to equipment for children with life-limiting conditions. She has provided consumer input into the National Disability Insurance Scheme, My Health Record, the Australian Pension Review and the Victorian enquiry into Publicly Reported Outcomes Measures.

Liat Watson

Heather Renton

Heather Renton is the founder and President of Syndromes Without a Name (SWAN) - Australia, an advocacy group for families with undiagnosed children. Heather is the mother of a 10-year-old who until recently remained undiagnosed.

Heather is a member of the Croxton School Council, and also runs the Croxton parent support group and fundraising group.

Heather Renton

Margaret Sahhar

Margaret retired in 2016 following a distinguished career of more than 40 years at the forefront of genetic counselling and patient support.

Appointed senior social worker at the Victorian Clinical Genetics Services (VCGS) in 1974, Margaret began working with families of children with genetic conditions, principally in the Bone Dysplasia Clinic. Margaret recognised the important role of parent support groups; she facilitated the formation of many and served on various boards. In 1996, together with various genetic support groups, Margaret founded the Genetic Support Network of Victoria (GSNV).

Margaret was a member of the inaugural Board of the Human Genetics Society of Australasia (HGSA), which developed the first guidelines to establish the profession of genetic counselling in Australia, in 1989. She went on to be appointed founding Director of the Master of Genetic Counselling (University of Melbourne).

Margaret was awarded the inaugural University of Melbourne (Department of Paediatrics) prize for excellence in teaching in 2016. Two awards have been established in Margaret’s name: a GSNV incentive award for new support groups, and an academic excellence award in the Master of Genetic Counselling course.

Margaret Sahhar

Janney Wale

Dr Janney Wale has a PhD in pharmacology and post-doctoral experience in industry, university and research institute environments. Forced to rethink her priorities because of her own health issues, Janney became an active member of the  Consumer Network for the evidence-based organisation, The Cochrane Collaboration, and a health consumer voice both locally and nationally in Australia.

Janney is particularly interested in empowering consumers with the health information they need to inform their choices for the health of themselves and their families. As a consumer editor at Cochrane, Janney contributes to the development of plain language summaries of systematic reviews of best evidence, published in the Cochrane Library. She is also a member of HTAi and enabling consumers to have a voice in new health technologies and health policy.

Janney is a member of The Royal Melbourne Hospital Community Advisory Committee.

Janney Wale

Christine Walker

Christine is Executive Officer of the Chronic Illness Alliance, an Australian peak body representing more than 50 consumer and advocacy organisations for people with chronic illness. The Alliance achieves its aim of improved focus in health policy and health services for those with chronic illness through research and educational activities, often in co-operation with universities.

Christine manages a longitudinal survey into the social impact of epilepsy in Australia. Christine has researched and published extensively on self-management in chronic diseases, as well as consumer participation in health services.

Christine is a board member of NPS MedicineWise and of the National Standing Committee on Quality for the Royal Australian College of General Practitioners (RACGP). Current activities include working with Centre for Stem Cells Systems at the University of Melbourne, the consumer perspective on multiple conditions and a Primary Health Network in Victoria.

 
Clara Gaff, Executive Director, Melbourne Genomics Health Alliance    
Karen Meehan, Communication and Engagement Manager, Melbourne Genomics Health Alliance