WARDA and Genetics WA - Working to Close the Gap

When you work within part of such a big health service, it is sometimes impossible to know how amazing your colleagues really are! But yesterday at our staff forum, we heard from Head the Western Australian Register of Developmental Anomalies and a Clinical Geneticist Dr Gareth Baynam and our WA young Australian of the Year Yarlalu Thomas, a first year medical student with an absolute passion for closing the gap. Together they are making a huge difference to the lives of people living with rare diseases in WA and in remote Aboriginal Communities.

One in three rare diseases have subtle facial clues. Gareth leads the Cliniface team who utilise novel 3D facial analysis and visualisation methods to assist clinical diagnosis, treatment monitoring, clinical trials and surgical planning for children with rare diseases. A key initiative of the team is the Pilbara Faces project which is leading the way to understand normal 3D facial variation of Aboriginal people. This provides the basis to help deliver more equitable health care. This program was made possible by the Roy Hill Community Foundation, in partnership with Perth Children’s Hospital Foundation.

Dr Baynam likes to say that: “our face is a biological billboard that advertises our physical and mental wellness, our ageing and our disease. So the Cliniface helps to harness the ways in which we extract detailed information from faces to assist in improving the lives of children with rare diseases.”

The Pilbara Faces project has delivered the world’s first 3D photo library of Australian Aboriginal faces and will provide a medical resource for doctors to improve Aboriginal medical care.

Given there are enough children living with a rare disease in WA to fill Optus Stadium, this work is changing the lives of many West Australian families.

With Indigenous children no more, or less, likely to suffer from a rare disease, Gareth, and the team at Genetics Services of WA and The Western Australian Register for Developmental Anomalies (WARDA) are also working with Yarlalu Thomas and other Aboriginal youths to break down the language barriers for Aboriginal people ensuring them improved access to health care services.

Young West Australian of the Yarlalu Thomas used his passion for his family and people living in remote communities to inspire and motivate himself to address health inequity. Following completion of this Medical Science degree in NSW, Yarlalu used 2019 to return home and after receiving the Roy Hill Foundation Fellowship in Precision Public Health travelled around indigenous communities to help collate a library of indigenous faces that can be used by the Pilbara Faces project. He also used that time to drive the Lyfe Languages initiative.

Put simply, Lyfe Languages enables translation of language used by doctors, into ‘lay language’ that can be understood by people in remote communities, opening up a world of health care opportunities to them. It focuses on advancing rare diseases diagnosis in children, and provides a foundation for transformation of other domains. After reaching out to other medical professionals and high-profile Aboriginal people in 2019, there are currently 11 different indigenous languages being translated and already there are more than 350 medical terms available in indigenous language.

The life-changing work of Lyfe Languages here will be the basis of supporting and informing a number of international projects with Yarlalu as their thought leader and implementation guider. The World Economic Forum is now partnering with Yarlalu and the other Australian Lyfe Language Champions and with the Rare Disease Ghana Initiative to rollout Lyfe Languages in Ghana – different place, different people, different cultures, same goal.

Gareth has dedicated many years to equitably improving access to genetic services for families in WA. In 2019 he was acknowledged for making significant and sustained contributions to health when he won the 2019 Minister’s Award at the WA Health Awards. In addition, his team at Cliniface have recently been nominated for the Science Engagement Initiative at the 2020 Premier’s Science Awards.