SESSION 6.1 - HSIE and Precision Therapy - Delivering outcomes focused sustainability for children in the era of precision medicine
Tracks
Track 1
ii. Translational
| Friday, November 8, 2024 |
| 11:00 AM - 1:00 PM |
| Leighton Hall, John Niland Scientia Building |
Adj A/Prof Cathryn Cox PSM
Chief Executive
Sydney Children’s Hospitals Network
Chair
Biography
Cathryn Cox PSM was appointed Chief Executive of Sydney Children’s Hospitals Network in August 2020. Cathryn has many years of experience as an Executive within NSW Health with responsibility for a range of health policy, planning, infrastructure and strategic reform programs. Cathryn is passionate about the role of Sydney Children’s Hospitals Network in providing world-class patient-centred care for children and young people, and their families, as well as ground breaking health research and its translation into clinical practice. Cathryn is a member of a number of Boards and is an Adjunct Associate Professor at the University of Sydney. Cathryn was awarded a Public Service Medal in 2018. Directorships: Director – Sydney Health Partners; Director – Maridulu Budyari Gumal, the Sydney Partnership for Health, Education, Research and Enterprise (SPHERE); Director – NSW Health Pathology Board; Chair – National Centre for Immunisation Research and Surveillance Advisory Board.
Dr Gary Freed
Professor
University of Michigan
Keynote Presentation: The need to evaluate health services innovations at scale: challenges and opportunities in the US and Australia
11:00 AM - 11:30 AMBiography
Gary L. Freed MD, MPH is the Percy and Mary Murphy Professor of Pediatrics in the School of Medicine and Professor of Health Management and Policy in the School of Public Health at the University of Michigan. He serves as Associate Chair for Government Relations in the Department of Pediatrics and the Directory of Research for the Office for Health Equity and Inclusion in the Medical School.
Dr. Freed has more than 30 years of experience in children's health services research. He founded the first pediatric health services research center in the US and directed the first NIH-funded pediatric health services research fellowship in the nation. He has been the principal investigator of numerous grants on child health policy and health economics, immunizations, health care quality measurement, health inequities, physician behavior and the medical workforce.
He is a past president of the Society for Pediatric Research, the largest research society in child health. He is past chair of the Department of Health and Human Services National Vaccine Advisory Committee and a fellow of the American Academy of Pediatrics. He recently completed his term as the President of the International Pediatric Research Foundation, an organization comprised of the leading pediatric research societies in the US and Europe. His research outside of the US has included health policy and economic studies in both western and eastern Europe, the former Soviet Union, Israel, Japan and Australia. He just completed work as a 2021-22 Fulbright Scholar to The Netherlands where he conducted foundational research into the health care delivery for children and worked to develop the field of pediatric HSR in that country.
He spent 3 years in Australia as a visiting scholar at the Royal Children’s Hospital and as a Professor in the School of Population and Global Health. While at the RCH he started the health services research program.
In 2023 he founded the Program for Equity and Child Health (PEACH) and the Michigan Child Health Equity Collaborative (Mi-CHEC), the first quality collaborative in the US focused on child health equity.
Prof Raghu Lingam
UNSW Sydney
Strengthening Child Health Systems
11:30 AM - 11:45 AMBiography
Professor Raghu Lingam is a senior clinical academic with extensive expertise in maternal and child health services research. He holds the position of Professor in Paediatric Population and Health Services Research at the University of New South Wales and serves as an Honorary Professor at Kings College London and the Black Dog Institute (NSW). Additionally, he is a Consultant Paediatrician within the Sydney Children’s Hospital Network. Professor Lingam leads the Population Child Health and Health Services Research Group at UNSW Sydney, the NSW Centre for Child Health Services Research and Innovations (CHRIS), and its national counterpart, Child Unlimited. Raghu’s research focuses on developing and evaluating large-scale child health intervention programs across various settings to enhance the health and development of children and young people. With over 140 publications and more than $49.5 million in research funding secured in the last five years, his contributions to the field are widely recognised.
Prof Karen Zwi
Sydney Children's Hospitals Network
What is PEACH and PEACH-E? Current Update and Next Steps
11:45 AM - 12:00 PMBiography
Professor Karen Zwi is a Consultant Community Paediatrician at Sydney Children’s Hospital (SCH), Conjoint Professor at the University of New South Wales (UNSW), , and the Clinical Services Director for Child Youth and Family in Northern Sydney Local Health District (NSLHD). She is a practicing Community Paediatrician with clinical expertise in treating children from priority populations such as asylum seekers, refugee children, children in Out of Home Care and Aboriginal children. She believes in developing services that are strengths based, promote equity and resilience, and are effective in improving child health outcomes and the patient and family experience.
Ms Seaneen Wallace
Priority Populations Care Navigator
Sydney Children’s Hospitals Network
Co-presenter (with above presentation)
11:45 AM - 12:00 PMBiography
Seaneen Wallace is Gunggari and Bundjalung woman who lives on Dharawal country and is the project co-Ordinator for the PEACH project. A community dietitian by background, Seaneen completed the 3 year NSW Health Aboriginal Health Population Health traineeship through Sydney Children's Hospital Network where she gained her Master of Public Health and industry experience in a range of public health areas such as epidemiology, communicable disease management and health service design and evaluation. She is passionate about improving the health outcomes of Aboriginal and Torres Strait Islander children and young people through health equity research, utilising both Western and Indigenous methodologies.
Adj A/Prof Cathryn Cox PSM
Chief Executive
Sydney Children’s Hospitals Network
Facilitator - Panel Discussion: Thinking outside the silos: innovations to optimise the health system for children
12:00 PM - 12:30 PMBiography
Cathryn Cox PSM was appointed Chief Executive of Sydney Children’s Hospitals Network in August 2020. Cathryn has many years of experience as an Executive within NSW Health with responsibility for a range of health policy, planning, infrastructure and strategic reform programs. Cathryn is passionate about the role of Sydney Children’s Hospitals Network in providing world-class patient-centred care for children and young people, and their families, as well as ground breaking health research and its translation into clinical practice. Cathryn is a member of a number of Boards and is an Adjunct Associate Professor at the University of Sydney. Cathryn was awarded a Public Service Medal in 2018. Directorships: Director – Sydney Health Partners; Director – Maridulu Budyari Gumal, the Sydney Partnership for Health, Education, Research and Enterprise (SPHERE); Director – NSW Health Pathology Board; Chair – National Centre for Immunisation Research and Surveillance Advisory Board.
Prof Raghu Lingam
UNSW Sydney
Panel member
Biography
Professor Raghu Lingam is a senior clinical academic with extensive expertise in maternal and child health services research. He holds the position of Professor in Paediatric Population and Health Services Research at the University of New South Wales and serves as an Honorary Professor at Kings College London and the Black Dog Institute (NSW). Additionally, he is a Consultant Paediatrician within the Sydney Children’s Hospital Network. Professor Lingam leads the Population Child Health and Health Services Research Group at UNSW Sydney, the NSW Centre for Child Health Services Research and Innovations (CHRIS), and its national counterpart, Child Unlimited. Raghu’s research focuses on developing and evaluating large-scale child health intervention programs across various settings to enhance the health and development of children and young people. With over 140 publications and more than $49.5 million in research funding secured in the last five years, his contributions to the field are widely recognised.
Dr Gary Freed
Professor
University of Michigan
Panel member
Biography
Gary L. Freed MD, MPH is the Murphy professor of Pediatrics and professor of Health Policy at the University of Michigan, and Director of Research for the Office for Health Equity and Inclusion.
Dr. Freed has >30 years of experience in children's health services research. He founded the first pediatric health services research center in the US. He has been the principal investigator of numerous grants on child health policy and health economics, immunizations, healthcare quality measurement, health inequities, physician behavior and the medical workforce.
He is past president of the Society for Pediatric Research, the largest research society in child health. From 2013-2016 he was visiting scholar at the Royal Children’s Hospital and Professor of Population Health at Melbourne University.
In 2023 he founded the Program for Equity and Child Health and the Michigan Child Health Equity Collaborative, the first collaborative in the US focused on child health equity.
Prof Susan Woolfenden
Professor Of Community Paediatrics/director Of Community Paediatrics
Sydney Local Health District and University of Sydney
Panel member
Biography
Professor Sue Woolfenden is the Director of Community Paediatrics at SLHD, and Professor of Community Paediatrics at the University of Sydney. In her clinical, service development and research roles she aims to address child health and health care inequities in Australia and globally through innovative integrated health-social service models including Hubs and care navigation. She has 166 peer review publications and > 16 M funding to support her work. She is the co-chair of the Sydney Health Partners Child and Adolescent Clinical Academic Group and the Sydney Institute for Women, Children and their Families at SLHD. She co-leads the psychosocial platform of the Luminesce Alliance.
Dr Helen Goodwin
Chief Paediatrician
NSW Ministry of Health
Panel member
Biography
Dr Sophy Shih
Senior Research Fellow
Kirby Institute
Panel member
Biography
Dr Shih is a health economist with expertise in economic evaluation and health service research. She has established extensive knowledge and skills in designing and implementing trial-based economic assessments, performing economic evaluations, and building economic models. Her research covers a broad range of topics, including infectious diseases testing, rare genetic disorders screening, diabetes prevention, psycho-oncology intervention, skin cancer prevention, cerebral palsy and disability support.
In 2020, Dr Shih conducted an economic evaluation of newborn screening (NBS) for severe combined immunodeficiency (SCID) and spinal muscular atrophy (SMA) and reported the findings to NSW Health. She led the publication of the world-first paper on cost-effectiveness analysis of gene replacement therapy for SMA in the era of universal newborn screening. This cost-effectiveness study has had a strong impact on clinical and policy decision-making in Australian NBS and has gained international recognition by health technology assessment agencies in the UK and Spain.
Ms Kris Pierce
Director Of Consumer Engagement
Child Unlimited
Conference Abstract Presentation: The consumer group landscape: identifying advocacy gaps and improving precision medicine outcomes
12:30 PM - 12:45 PMAbstract
Consumers are essential to ensuring research translation is meaningful. As paediatric precision medicine (PPM) advances, there is a need to integrate psychosocial care to address the unique challenges faced by families, therefore emphasising the necessity for consumer engagement. Current efforts to engage consumer groups are often fragmented, creating silos that hinder comprehensive advocacy and support. This causes difficulty for researchers to practice effective consumer engagement and burdens consumers.
This study aims to explore the landscape of consumer groups across Sydney Children’s Hospital Network (SCHN) related to PPM, focusing on understanding their dynamics, functions, and capacity for collaboration. By identifying these elements, we seek to uncover opportunities to reduce silos and improve psychosocial integration within the precision medicine framework.
Phase one of this study involved conducting an Environmental Scan (ES) to identify consumer groups and organisations throughout the SCHN relevant to PPM. An online search was conducted and supplemented with groups shared by PPM clinicians and researchers. To gain further insights into group dynamics, characteristics, and collaborative potential, interviews and surveys will be conducted in Phase two.
The ES identified forty-one consumer groups and organisations. The primary areas advocated for included epilepsy, cancer, cerebral palsy and general mixed age chronic illness and disability. The role and purpose of each group was identified for most of the groups. However, we were unable to determine information about group characteristics and collaborative capacity.
This study has been able to identify gaps in advocacy, such as psychosocial care surrounding PPM and resulted in a comprehensive map of the current consumer landscape. This foundational knowledge is essential, however, Phase two will reveal actionable knowledge about how to champion and collaborate with these groups. This may address the current fractures in consumer engagement, with the aim of also reducing duplication, inefficiency and the overburdening of consumers.
This study aims to explore the landscape of consumer groups across Sydney Children’s Hospital Network (SCHN) related to PPM, focusing on understanding their dynamics, functions, and capacity for collaboration. By identifying these elements, we seek to uncover opportunities to reduce silos and improve psychosocial integration within the precision medicine framework.
Phase one of this study involved conducting an Environmental Scan (ES) to identify consumer groups and organisations throughout the SCHN relevant to PPM. An online search was conducted and supplemented with groups shared by PPM clinicians and researchers. To gain further insights into group dynamics, characteristics, and collaborative potential, interviews and surveys will be conducted in Phase two.
The ES identified forty-one consumer groups and organisations. The primary areas advocated for included epilepsy, cancer, cerebral palsy and general mixed age chronic illness and disability. The role and purpose of each group was identified for most of the groups. However, we were unable to determine information about group characteristics and collaborative capacity.
This study has been able to identify gaps in advocacy, such as psychosocial care surrounding PPM and resulted in a comprehensive map of the current consumer landscape. This foundational knowledge is essential, however, Phase two will reveal actionable knowledge about how to champion and collaborate with these groups. This may address the current fractures in consumer engagement, with the aim of also reducing duplication, inefficiency and the overburdening of consumers.
Biography
Ms. Kris Pierce (MHealthSc (HealthProm&HealthEd), MWellness, Nursing) is a distinguished leader in consumer involvement and advocacy within the healthcare sector. As the Director of Consumer Involvement at Child Unlimited, UNSW, she has developed and implemented consumer engagement frameworks and led patient-centred initiatives. She has co-founded and leads SCN2A Australia and has contributed to the International League Against Epilepsy (ILAE), Global Genes, and The Epilepsy Foundation. Recognised through her induction into the Victorian Women’s Honour Roll and a nomination for the Children’s Healthcare Australasia Medal of Distinction, she continues to enhance patient and family engagement, ensuring consumer voices are integral to healthcare decision-making. Most recently, Kris was appointed to Medical Services Advisory Committee – Evaluation Sub-Committee.
Ms Rebecca Bosward
Sydney Local Health District
Conference Abstract Presentation: Paediatric service navigation to address life challenges: a mixed-methods study
12:45 PM - 1:00 PMAbstract
Background: Healthcare providers face significant barriers identifying and responding to adversity for children, young people, and their families. Innovative solutions to improve early identification of and intervention for adversity are required. This study aimed to assess feasibility and acceptability of a service navigation program for families experiencing adversity.
Methods: We conducted a mixed-methods implementation and evaluation study including: 1) co-design of an integrated health and social model of care; 2) implementation of a service navigator program in a community health centre; and 3) mixed-methods program evaluation. Participants included caregivers with children aged 0-18 years referred to service navigation, medical, allied health, legal and social service providers. Co-design workshops were conducted with relevant stakeholders to identify research priorities and develop a model of care including service navigation. The program was implemented during 2022-2023 in Marrickville, Sydney. Quantitative data on participant and program characteristics were collected and analysed and semi-structured interviews were undertaken to explore experiences of service navigation.
Results: Most caregivers were born in Australia (27/33, 82%), with (12/33, 36%) identifying as Aboriginal and (5/33,15%) speaking languages other than English at home. Common needs included financial (25/33, 64%), housing and mental health/substance use, both (19/33, 49%). Participants found the program acceptable due to trust in the service navigator. They reported efficient and streamlined referrals processes. Barriers to utilising the program included complex care needs requiring intensive navigation, high staff turnover, and poor confidence in sustainability of the navigation service.
Conclusion: A service navigation program for families experiencing adversity was feasible and acceptable, however integrated models of care and services should accommodate a spectrum of complex care needs with fluctuating workforce capacity. Approaches to address this include exploring other early identification and intervention strategies for family adversity such as use of digital platforms for integrated care and service navigation.
Methods: We conducted a mixed-methods implementation and evaluation study including: 1) co-design of an integrated health and social model of care; 2) implementation of a service navigator program in a community health centre; and 3) mixed-methods program evaluation. Participants included caregivers with children aged 0-18 years referred to service navigation, medical, allied health, legal and social service providers. Co-design workshops were conducted with relevant stakeholders to identify research priorities and develop a model of care including service navigation. The program was implemented during 2022-2023 in Marrickville, Sydney. Quantitative data on participant and program characteristics were collected and analysed and semi-structured interviews were undertaken to explore experiences of service navigation.
Results: Most caregivers were born in Australia (27/33, 82%), with (12/33, 36%) identifying as Aboriginal and (5/33,15%) speaking languages other than English at home. Common needs included financial (25/33, 64%), housing and mental health/substance use, both (19/33, 49%). Participants found the program acceptable due to trust in the service navigator. They reported efficient and streamlined referrals processes. Barriers to utilising the program included complex care needs requiring intensive navigation, high staff turnover, and poor confidence in sustainability of the navigation service.
Conclusion: A service navigation program for families experiencing adversity was feasible and acceptable, however integrated models of care and services should accommodate a spectrum of complex care needs with fluctuating workforce capacity. Approaches to address this include exploring other early identification and intervention strategies for family adversity such as use of digital platforms for integrated care and service navigation.
Biography
Rebecca Bosward is a research coordinator for the Centre for Research Excellence in Childhood Adversity and Mental Health and a doctoral candidate at the University of Wollongong. She completed her Bachelor (Hons) degree in Public Health at the University of Wollongong.
