Niki Kouvroukoglou
Addressing barriers to global multidisciplinary stakeholder inclusivity: Lessons from global orofacial cleft research priority setting
Kouvroukoglou, Niki; Sandhu, Sanita; Delage, Barbara; Sell, Debbie; Stock, Nicola; Davies, Gareth; Campodonico, Marina; Richard, Bruce; Gathuya, Zipporah Njeri; Eshete, Mekonen; Mehendale, Felicity V
Authors
Sanita Sandhu
Barbara Delage
Debbie Sell
Dr Nicola Stock Nicola2.Stock@uwe.ac.uk
Associate Professor of Psychology
Gareth Davies
Marina Campodonico
Bruce Richard
Zipporah Njeri Gathuya
Mekonen Eshete
Felicity V Mehendale
Abstract
Background Inclusivity in research priority setting is fundamental to capturing the opinion of all stakeholders in a research area. Globally, experienced healthcare workers often have deep insights that could impactfully shape future research, and a lack of their involvement in formal research and publications could mean that their voices are
insufficiently represented. We aimed to modify the well-established Child Health and Nutrition Research Initiative (CHNRI) methodology to address barriers to inclusivity, which are particularly relevant in healthcare that requires highly multidisciplinary care.
Methods This global research priority-setting exercise for orofacial clefts adapted the CHNRI methodology to include research experts, clinicians from multiple disciplines, and non-technical stakeholders (i.e. patients and parents and non-governmental organisations (NGOs)) on a global basis. A multidisciplinary international steering group proposed and discussed methodological changes to improve
inclusivity, including survey edits, subgroups for research questions, a demographics section, translation in French and Spanish, phrasing adaptation, and alternative dissemination techniques.
Results We received 412 responses and 1420 questions, spanning 78 different countries and 18 different specialties/groups. Challenges remain to improve representation of all groups, with the vast majority of answers (30%) being from surgeons and a comparatively small proportion from patient/parent groups (9%). This also includes managing responses in three languages, effective dissemination,
and responses that were not worded as research questions.
Conclusions This is one of the first CHNRI exercises to involve patients and parents, clinicians, and researchers in its first question submission stage, and the first ever to do so on a global scale. We describe our approach to addressing inclusivity challenges and report related demographic data to serve as a benchmark upon which we hope future CHNRI exercises will improve.
Journal Article Type | Article |
---|---|
Acceptance Date | Dec 14, 2024 |
Online Publication Date | Dec 14, 2024 |
Publication Date | Dec 14, 2024 |
Deposit Date | Jan 6, 2025 |
Publicly Available Date | Jan 7, 2025 |
Journal | Journal of Global Health |
Print ISSN | 2047-2978 |
Electronic ISSN | 2047-2986 |
Publisher | International Society of Global Health |
Peer Reviewed | Peer Reviewed |
Volume | 14 |
Article Number | 04261 |
DOI | https://doi.org/10.7189/jogh.14.04261 |
Keywords | Visible Difference; Cleft Lip and Palate; Methodology; Low and Middle Income Countries |
Public URL | https://uwe-repository.worktribe.com/output/13592899 |
Files
Addressing barriers to global multidisciplinary stakeholder inclusivity: Lessons from global orofacial cleft research priority setting
(1.6 Mb)
PDF
Licence
http://creativecommons.org/licenses/by/4.0/
Publisher Licence URL
http://creativecommons.org/licenses/by/4.0/
You might also like
Caring for a child with a cleft lip and/or palate: A narrative review
(2024)
Journal Article
Downloadable Citations
About UWE Bristol Research Repository
Administrator e-mail: repository@uwe.ac.uk
This application uses the following open-source libraries:
SheetJS Community Edition
Apache License Version 2.0 (http://www.apache.org/licenses/)
PDF.js
Apache License Version 2.0 (http://www.apache.org/licenses/)
Font Awesome
SIL OFL 1.1 (http://scripts.sil.org/OFL)
MIT License (http://opensource.org/licenses/mit-license.html)
CC BY 3.0 ( http://creativecommons.org/licenses/by/3.0/)
Powered by Worktribe © 2025
Advanced Search