Co‐Producing Patient‐Reported Experience Measures With People With Intellectual Disability to Improve Healthcare Quality and Outcomes: The ‘Listen to Me’ Project Protocol
The Listen to Me project has been designed and planned to ensure the involvement of people with a broad range of abilities, including those with profound intellectual disability who will be able to contribute along with their support person/s. The governance structure of Listen to Me is innovative and inclusive, with consumers providing leadership across all elements of the project. This is co-research conceptualised and conducted with a Consumer Leadership Group (CLG) comprising eight people with lived experiences of intellectual disability; two of whom have an intellectual disability and six of whom are parents or siblings who support family members with intellectual disability. The CLG were involved in the design of the research proposal, reviewing and contributing to the ethics protocols, and the writing of this protocol as authors. The CLG will direct and contribute to all aspects of the research as part of the research team. An easy read summary of this protocol is provided in Supplementary file 1.
Authors
- Nadine A. Hackl
- Sophie Rodier (ORCID: https://orcid.org/0000-0002-8139-6005)
- Tracey Szanto
- Julian Norman Trollor (ORCID: https://orcid.org/0000-0002-7685-2977)
- Patrick L. Olivier (ORCID: https://orcid.org/0000-0003-2841-7580)
- Iva Strnadová (ORCID: https://orcid.org/0000-0002-8513-5400)
- Tim Badgery‐Parker (ORCID: https://orcid.org/0000-0002-1275-1130)
- Beth Catlett (ORCID: https://orcid.org/0000-0003-3803-5391)
- Susan Woolfenden (ORCID: https://orcid.org/0000-0002-6954-5071)
- Michelle Templeton (ORCID: https://orcid.org/0000-0003-0957-7685)
- Angela Dew (ORCID: https://orcid.org/0000-0002-8800-5660)
- Elizabeth Manias (ORCID: https://orcid.org/0000-0002-3747-0087)
- Kate Churruca (ORCID: https://orcid.org/0000-0002-9923-3116)
- Ling Wu (ORCID: https://orcid.org/0000-0001-5406-6927)
- Johanna Westbrook (ORCID: https://orcid.org/0000-0003-1083-8192)
- Corey A. Adams (ORCID: https://orcid.org/0000-0001-9263-8658)
- Jacqueline Small
- Pandora Patterson (ORCID: https://orcid.org/0000-0002-1686-3252)
- Bronwyn Newman (ORCID: https://orcid.org/0000-0002-5147-7381)
- Laurel Mimmo (ORCID: https://orcid.org/0000-0001-7738-8275)
- Karen P. Phillips (ORCID: https://orcid.org/0000-0002-6041-0197)
- Anne Marie Hadley
- Reema Harrison (ORCID: https://orcid.org/0000-0002-8609-9827)
- Virginia Mumford (ORCID: https://orcid.org/0000-0001-7915-0615)
- Jane Evans (ORCID: https://orcid.org/0000-0002-4079-7339)
- Rebecca J Mitchell (ORCID: https://orcid.org/0000-0003-1939-1761)
- Louise A. Ellis (ORCID: https://orcid.org/0000-0002-2012-1980)
- Debbie van Hoek
- Dalal Baumgartner
- Kelly Bowen
- Matthew van Hoek
- Maya Tokutake
Institutions
- New South Wales Department of Health (AU)
- Australian Bureau of Statistics (AU)
- Deakin University (AU)
- Fairfield Hospital (AU)
- UNSW Sydney (AU)
- St Vincent's Health (AU)
- Innovative Clinical Research (US)
- Monash Health (AU)
- National Centre for Clinical Research on Emerging Drugs (AU)
- Sydney Local Health District (AU)
- Monash University (AU)
- Victoria University (AU)
- Macquarie University (AU)
Publication Details
- Journal
- Health Expectations
- Published
- 2025-08-29
- DOI
- https://doi.org/10.1111/hex.70418
- Citations
- 1
- Primary Topic
- Healthcare innovation and challenges
- Type
- article
- Field-Weighted Citation Impact
- 8.93
Funders
- Macquarie University