Collaborating with people with intellectual disability
This project pioneers co-created patient-reported experience measures (PREMs) with people with intellectual disability to improve healthcare quality and outcomes.
Project sponsor: Medical Research Future Fund project grant (2026313)
About the project
Download easy to read project description.
People with intellectual disability experience major health inequity, poor health outcomes and premature deaths, which eclipse other priority groups in Australia.
PREMs are used worldwide to target improvements in healthcare outcomes. Yet research demonstrates that people with intellectual disability are excluded from PREMs due to lack of suitable measurement instruments and supports.
To improve healthcare quality and outcomes, people with intellectual disability and their supporters, academic and clinician researchers will together co-produce PREMs for, and with, this population.
The Listen to Me project comprises a mixed methods design with citizen science methodologies.
Project goals
The project aims to co-create health knowledge:
- that will be applied to improve healthcare quality and outcomes for people with intellectual disability
- by engaging in co-research practices that increase consumer knowledge.
The project will co-create innovative PREMs with people with lived experience of intellectual disability, using web-based platforms and digital tools produced with Action Lab (Monash University) to create consumer-centric PREMs ready for adoption.
Co-produced PREMs and resources to enable their use will be adopted by up to 20 partner hospitals nationally, to co-create new knowledge of hospital care experiences.
Resulting data will direct quality improvement projects in the health district partners in New South Wales and Victoria that reduce:
healthcare associated harm
- preventable hospitalisation
- prolonged length of stay.
Project lead: Professor Reema Harrison
- Corey Adams
- Dr Beth Catlett
- Associate Professor Louise Ellis
- Professor Rebecca Mitchell
- Dr Virginia Mumford
- Dr Bronwyn Newman
- Professor Johanna Westbrook
Consumer leadership group
- Kim Bowen
- Dalal Dawood Baumgartner
- Professor Elizabeth Manias
- Pandora Patterson
- Karen Philips
- Maya Tokutake
- Matthew Van Hoek
- Deborah Van Hoek