Standards of Care

Australian Standards of Care for Childhood-onset Heart Disease (CoHD)

Excellence in Healthcare for all Australians affected by CoHD

The National Standards of Care for Childhood-onset Heart Disease (SoC-CoHD) project began in 2020 and is the first project prioritised in the National Strategic Action Plan for Childhood Heart Disease launched by Minister Greg Hunt at Parliament House, Canberra (Feb 2019). This was the culmination of a 10-year process of joint professional, family engagement and advocacy through HeartKids Ltd.

The project is co-Chaired by A/Prof Gary Sholler, a senior paediatric cardiologist, researcher, and national leader in CHD, and Dr. Lisa Selbie, Head of Research and Board member of HeartKids Ltd and coordinated by Dr Mary Tallon. It is governed by a National Steering Committee and a widely representative Advisory Group of health professionals and consumers who are working together on developing the Standards.

The purpose of the Standards of Care

• The purpose of the SoC-CoHD is to provide the first national standards and a framework to ensure all Australian patients and families affected by CoHD receive excellence in comprehensive cardiac care.
• The SoC-CoHD will hold patients and families at the centre and use a whole-of-life approach aimed at providing excellence and good health as target, inclusive of mental health and neurodevelopmental care. These standards will provide a clear and evidenced based reference for the delivery of care, and ongoing planning of services for patients, families, healthcare professionals, service developers, and policy makers in all relevant sectors.
• The SoC-CoHD will recognise and address the challenges associated with access and equity to specialty services across regional and rural Australia and facing priority populations. 
• The SoC-CoHD will also provide a framework for the development of clinical guidelines and determine infrastructure needs. The Standards, Infrastructure and Clinical Guidelines constitute Key Focus Area No. 1 of the National Action Plan for Childhood Heart Disease. It will inform and guide clinical care, education, and embed the role of research for CoHD included in the National Strategic plan. Patients and families will be supported in their decision-making by accessing information about healthcare services they can expect to receive, how they might seek support, or how to connect with others.

The scope of the Standards of Care

With an emphasis on excellence in healthcare for all Australians affected by CoHD, these National Standards of Care will outline the best contemporary practice standards for quality care and sustainable services. This will ensure the SoC-CoHD will continue to be useful for Australian patients and families, the healthcare professionals who care for them, and for service developers, providers and policy makers who direct and manage infrastructure and governance.

The SoC-CoHD will define the central tenants of practice in large hospital services, regional and remote clinic across the lifetime of patients. It will address the important role of general practitioners, primary paediatric and community health providers, and education in providing accessibility and continuity across care settings.  Detailed paths will be defined in Phase 2 of the Standards project with the progressive development of Clinical Guidelines.

Public Consultation on the Standards of Care

Stakeholder input and public consultation will be sought on the first draft of the Standards in October 2021. This will ensure the CHD community, patients and families, all levels of government, non-government organisations, appropriate peak bodies and health care providers are included.

Key Project Contacts

Co-Chairpersons:

• A/Prof. Gary Sholler
• Dr Lisa Selbie

Project Coordinator:

• Dr Mary Tallon (HeartKids Ltd Project Coordinator)

Contact Email

• standardsofcare@heartkids.org.au