Listen to Me
This project is supported by a Medical Research Future Fund project grant 2026313.
Project team members
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|  Dr Louise Ellis Senior Research Fellow |
Project members - Consumer Leadership Group
Lived Experience Researchers | |||
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Project members - external
Description
Listen to Me is a project that pioneers co-created patient-reported experience measures (PREMs) with people with intellectual disability to improve healthcare quality and outcomes).
Intellectual disability, defined by significant limitations in both intellectual functioning and adaptive behaviour with onset during the developmental period, affects about 500,000 Australians. People with intellectual disability experience major health inequity, poor health outcomes and premature deaths, which eclipse other priority groups in Australia.
Patient-reported experience measures (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.
Easy to read project description
Aims
The project aims to co-create health knowledge that a) will be applied to improve healthcare quality and outcomes for people with intellectual disability and b) engages in co-research practices that increase consumer knowledge.
Design and method
The Listen to Me project comprises a mixed methods design with citizen science methodologies.
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 >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, and prolonged length of stay.
Publications
- Harrison, R., Adams, C., Newman, B., Mimmo, L., Mitchell, R., Manias, E., Alston, M. & Hadley, A.-M. 2024. Measuring Healthcare Experiences Among People With Intellectual Disability: A Rapid Evidence Synthesis of Tools And Methods. Value in Health.
Associated publications
- Mimmo, L, Harrison, R, Travaglia, J, Hu, N & Woolfenden, S 2022, 'Inequities in quality and safety outcomes for hospitalized children with intellectual disability', Developmental Medicine and Child Neurology, vol. 64, no. 3, pp. 314-322. https://doi.org/10.1111/dmcn.15066
- Mimmo, L, Hodgins, M, Samir, N, Travaglia, J, Woolfenden, S & Harrison, R 2022, ''Smiles and laughter and all those really great things': nurses' perceptions of good experiences of care for inpatient children and young people with intellectual disability', Journal of Advanced Nursing, vol. 78, no. 9, pp. 2933-2948. https://doi.org/10.1111/jan.15256
- Mimmo, L, Woolfenden, S, Travaglia, J, Strnadová, I, Tokutake, M, Phillips, K, van Hoek, M, van Hoek, D & Harrison, R 2021, 'Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol', BMJ Open, vol. 11, no. 12, e050973, pp. 1-8. https://doi.org/10.1136/bmjopen-2021-050973
- Mimmo, L, Woolfenden, S, Travaglia, J & Harrison, R 2020, 'Creating equitable healthcare quality and safety for children with intellectual disability in hospital', Child: Care, Health and Development, vol. 46, no. 5, pp. 644-649. https://doi.org/10.1111/cch.12787
- Mimmo, L, Harrison, R & Hinchcliff, R 2018, 'Patient safety vulnerabilities for children with intellectual disability in hospital: a systematic review and narrative synthesis', BMJ Paediatrics Open, vol. 2, no. 1, e000201, pp. 1-7. https://doi.org/10.1136/bmjpo-2017-000201
Media
Project status
Current