Heart Patient Advocacy Group (PAG)
Our PAG is a key part of the Heart Flagship
Our Heart Flagship Patient Advocacy Group (PAG) is a committee that was formed in January 2021 to provide perspectives from the patient, family and Childhood Heart Disease (CHD) community on issues relevant to them.
The group consists of young people and adults with lived experience of childhood heart disease and heart failure, parents of patients, a Wadja Aboriginal Case Manager from The Royal Children's Hospital, the HeartKids State Manager for Victoria, and an MCRI researcher.
The PAG develops material that advocates for heart failure patients and their families, provides input on current research being undertaken at MCRI, as well as helping to communicate research to the wider CHD community.
Image: MCRI Heart Flagship Patient Advocacy Group
Our Heart Flagship Patient Advocacy Group (PAG) is a committee that was formed in January 2021 to provide perspectives from the patient, family and Childhood Heart Disease (CHD) community on issues relevant to them.
The group consists of young people...
Our Heart Flagship Patient Advocacy Group (PAG) is a committee that was formed in January 2021 to provide perspectives from the patient, family and Childhood Heart Disease (CHD) community on issues relevant to them.
The group consists of young people and adults with lived experience of childhood heart disease and heart failure, parents of patients, a Wadja Aboriginal Case Manager from The Royal Children's Hospital, the HeartKids State Manager for Victoria, and an MCRI researcher.
The PAG develops material that advocates for heart failure patients and their families, provides input on current research being undertaken at MCRI, as well as helping to communicate research to the wider CHD community.
Image: MCRI Heart Flagship Patient Advocacy Group
Our patient story videos
Heart failure in children is a difficult subject, but one that needs public attention. These videos share the experiences of patients and their families to increase awareness of childhood heart disease and heart failure in children.
These personal stories highlight the lifelong impact that these conditions have on patients and their families. It is our hope that these honest, engaging, relatable and hopeful videos will resonate with other patients and families going through their own journeys, whilst also stimulating discussion in the wider community.
The videos also touch on the hope offered by the research being performed at the Melbourne Children’s Campus, which has the potential to transform the lives of future children.
Murdoch Children's Research Institute and HeartKids would like to thank this incredible group of patients and parents for sharing these vital stories.
View patient videos on YouTube
Our team members
- Dr Adam Piers, Co-Chair
- Bec Peters, Co-Chair
- Mia Cowley, Young adult representative
- Lyndall Cowley, Parent representative
- Annette Gaulton The Royal Children's Hospital Wadja, Aboriginal Case Manager
- Tyler Airey, Adult patient representative
- Matthew Orchard, Adult patient representative
- Petra Bosch, Adult patient representative
- Tracy Stanley, HeartKids National Support Manager
Patient Advocacy Group presentation
Every year our Patient Advocacy Group is given the opportunity to present to members of the MCRI Heart Flagship on issues that impact them.
