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Australian Childhood Heart Disease Action Plan





Public Consultation Period HAS NOW CLOSED! 

Thank you to everyone who provided feedback on the Action Plan 


HeartKids is partnering with the childhood heart disease community to deliver Australia's first National Action Plan for Childhood Heart Disease (the Plan).  


The Plan will be delivered in consultation with the Paediatric and Congenital Council of CSANZ, the Clinical Leadership of all State and Territories Paediatric and Adult Cardiology teams; as well as other non-government agencies, Health Departments and the broader childhood heart disease research community.


Earlier this year, the Australian Government’s Department of Health provided a one-off grant of $150,000 to HeartKids to facilitate the development of the Plan which commenced in June 2018 and will be completed by October 2018.  


We will now be consolidating the feedback and updating the plan accordingly before presenting it to Department of Health and the Hon. Greg Hunt at the end of October.


HeartKids would like to acknowledge and thank the childhood heart disease community across a wide range of clinical, community and expert areas for their time, input and contribution to this process, please see the Acknowledgements in the Plan.  


If you would like to stay up to date with the Plan's development please register here.  



Background to the Plan 


The 2011 Childhood Heart Disease White Paper1 was reviewed and evaluated at the September 2017 HeartKids CHD Roundtable2.  


The following Plan priority areas and gaps were identified:  

  • Best practice models of care of all people living with and or impacted by childhood heart disease including infants, children, young people, adults and their families so that quality of life is improved and the burden of disease is reduced;  

  • Strategies to address the neurological and mental health issues for patients and their families,  

  • Define the workforce and infrastructure priorities of childhood heart disease to ensure equity of services;  

  • Prioritise and identify gaps in childhood heart disease research to inform the Medical Research Future Fund ' Conquering Childhood Heart Disease Mission'  

  • Make recommendations on how to address the tremendous financial impact of childhood heart disease; and  

  • Develop the performance measures to better understand not just patient care but also tracking the implementation of the Action Plan itself.  


Medical Research Future Fund - Conquering Childhood Heart Disease Mission – how it links to the Action Plan  


On 14th February 2017 The Hon. Greg Hunt Minister of Health pledged a minimum of $15 million from the Australian Government's Medical Research Future Fund under the 'HeartKids Conquering Childhood Heart Disease Research Mission’.  

The Plan will inform the research key priority areas of the HeartKids Conquering CHD Mission. The strategic and operational plans for the CHD Research Mission will be refined as a part of the Action Plan with specific consultations held in this regard.  

HeartKids will contribute $5 million over five years, and will work with Government and the philanthropic community (both in Australia and internationally) to attract further funding investments and donations.  

The 'HeartKids Conquering Childhood Heart Disease Mission' is just the fifth disease focus area of the Medical Research Future Fund. The aim is to invest between $20 -$30 million over the next five years. 


Alignment with the Chronic Diseases Strategic Framework – how it links to the Action Plan  

The Plan must align with the Australian Government National Strategic Framework for Chronic Conditions3. The Framework was approved by the Australian Health Ministers’ Advisory Council in 2017 and outlines the key objectives, and priority areas for Action Plans.  


Consultation and Stakeholder Engagement  

HeartKids will facilitate the development of the Plan under the direction of a National Steering Committee chaired by Ms Jan McClelland AM. The Plan is being developed in consultation with six Expert Subject Matter Working Groups and two drafts will be circulated for public and industry consultation from 19 September – 3 October 2018 


Consultation will take place with a broad range of stakeholders including:


  • Health consumers, that is, people living with or impacted by CHD including their families or care givers,
  • Cardiac peak bodies,
  • Research organisations,
  • Health professional bodies,
  • Other relevant government and non-government organisations and,
  • the Australian, State and Territory Governments, primarily each government’s Health Department.


  1. White Paper, 2011 - Childhood Heart Disease in Australia, February 2011, Professor Sandra Leggat.
  2. The National Childhood Heart Disease Round Table Communique, 2017
  3. National Strategic Framework for Chronic Conditions 2017, Department of Health, Australian Government