Involving experts by experience in craniofacial research

Journal article

Bates, A., Ardouin, K. and McWilliams, D. 2024. Involving experts by experience in craniofacial research. The Cleft Palate-Craniofacial Journal. https://doi.org/10.1177/10556656241283195
AuthorsBates, A., Ardouin, K. and McWilliams, D.
AbstractMany 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.
KeywordsCleft lip and palate; Psychosocial adjustment; Quality of life
Year2024
JournalThe Cleft Palate-Craniofacial Journal
PublisherSAGE
ISSN1055-6656
1545-1569
Digital Object Identifier (DOI)https://doi.org/10.1177/10556656241283195
Official URLhttps://journals.sagepub.com/doi/full/10.1177/10556656241283195?rfr_dat=cr_pub++0pubmed&url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org
Publication dates
Online12 Sep 2024
Publication process dates
Deposited23 Sep 2024
Publisher's version
License
File Access Level
Open
Output statusPublished
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License: CC BY-NC 4.0
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