Journal article
Involving Experts by Experience in Craniofacial Research
The Cleft palate-craniofacial journal, Vol.62(11), pp.1975-1980
11/2025
PMID: 39267370
Appears in Recent Faculty of Health Publications
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Abstract
Many areas of health research increasingly involve end users of research (typically patients and their families/caregivers) in study design, management, and dissemination. Beyond recruiting patients as research participants, the shift is towards engaging patients, parents and caregivers as active partners on the research team, who are recognised and valued as 'experts-by-experience' (EbyE). Currently, involving EbyE is not routine in global craniofacial research. This paper highlights the value of EbyE involvement, addresses how to incorporate EbyE at all stages of research and discusses key considerations in facilitating positive experiences for EbyE.
Details
- Title
- Involving Experts by Experience in Craniofacial Research
- Creators
- Amanda Bates - University of KentKenny Ardouin - University of CanterburyDanielle McWilliams - Canterbury Christ Church University
- Publication Details
- The Cleft palate-craniofacial journal, Vol.62(11), pp.1975-1980
- Publisher
- Sage
- Number of pages
- 6
- Identifiers
- 991013389897202368
- Copyright
- © 2024, American Cleft Palate Craniofacial Association.
- Academic Unit
- Faculty of Health
- Language
- English
- Resource Type
- Journal article