What it is
To ensure that all children and young people benefit from precision medicine, it is necessary to extend research beyond the laboratory to address the psychosocial risks of precision medicine and ensure its equitable rollout.
We are world leaders in applying a psychosocial lens to paediatric precision medicine, to ensure that the psychological, social and educational wellbeing of patients, their siblings, and their caregivers is not left behind with rapid advances in ‘omics’ technology and treatment-focused clinical research.
What we do
The Psychosocial Enabling Platform offers psychosocial research expertise and support to precision medicine studies to ensure that the needs of all patients, their siblings and their families are met.
We have an equity focus on priority populations including Aboriginal and Torres Strait Islander children, children from Culturally and Linguistically Diverse communities, children with lived experience of disability, children from rural and regional areas and/or those affected by socioeconomic disadvantage.
Our aim is to provide psychosocial resources for families, support education and schooling for children having paediatric precision medicine and their siblings and enhance mental health in children and families accessing paediatric precision medicine.
The platform includes the following services.
- A Consumer Board and Consumer Engagement Framework
- Specialist psychosocial equity research expertise
- Specialist statistical advice
- Grants support/advice
- Clinical psychology expertise for risk management
- Indigenous lived experience and expertise
- Connections and collaborations across supported studies
- Cultural capability and translation services from English to Chinese and Arabic
- Advocacy and dissemination of findings across supported studies
- University of NSW
- University of Sydney
- Sydney Children’s Hospitals Network (SCHN)