Ms Emily Shepard1, Ms Ann Porter2, Ms Jermy Pang3,7, Ms Hollie Feller1,4, Associate Professor Valerie Sung5,6, Dr Karen Liddle7,8, Ms Kayla Elliott6, Ms Libby Smith6
1UsherKids Australia, Mordialloc, Australia, 2Aussie Deaf Kids, Brunswick Heads, Australia, 3National Acoustics Laboratories, Macquarie University, Australia, 4Genetic Support Network of Victoria, Parkville, Australia , 5The Royal Children’s Hospital, Parkville, Australia, 6Murdoch Children’s Research Institute, Parkville, Australia, 7The University of Queensland, Brisbane, Australia, 8Queensland Children’s Hospital, Brisbane, Australia
Biography:
Emily Shepard, a committed advocate for equity and inclusion, founded UsherKids Australia to support children with Usher syndrome and their families. Drawing on her experience with her son, Louis, she leads important research including parental support and clinical awareness of Usher syndrome. Emily is involved in numerous initiatives across the deaf, vision loss, disability, and rare disease sectors, working to improve services, advocate for policy changes, and enhance community resources. Her leadership is widely recognised, recently becoming a co-chair of the inaugural AusChildDeafness-CAG. She continues to champion the contribution of those with lived experience in research efforts and collaborations.
Abstract
Effective collaboration with parents, carers, family members, and community stakeholders is crucial for enhancing the quality and relevance of health research. Despite the acknowledged importance of community involvement in Australian health research, such engagement often falls short of genuine partnership.
The Australian Childhood Deafness Research Community Advisory Group (AusChildDeafness-CAG) was established to bridge this gap by facilitating collaboration between families and young people with lived experience of childhood deafness and researchers. This initiative was catalysed by the Australian National Child Hearing Health Outcomes Registry (ANCHOR), an NHMRC-funded project which seeks to address inequities in service access for deaf and hard of hearing children in Australia.
This presentation will outline the purpose, scope, and underlying values of the AusChildDeafness-CAG, as well as our commitment to diversity and inclusion. The CAG aims to work collaboratively with researchers on childhood deafness projects, offering a platform to exchange advice, guidance, and knowledge between its members and the research community. By focusing on meaningful engagement, we aim to ensure that research outcomes are both relevant and respectful of the needs and perspectives of deaf and hard of hearing children and their families.
Our approach involves fostering open dialogue, valuing diverse viewpoints, and demonstrating the impact of community input throughout the research process. Through these efforts, we aspire to advocate effectively for the needs of the childhood deafness community and promote more inclusive research practices.