Skip to main content

Research Repository

Advanced Search

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

Addressing barriers to global multidisciplinary stakeholder inclusivity: Lessons from global orofacial cleft research priority setting Thumbnail


Authors

Niki Kouvroukoglou

Sanita Sandhu

Barbara Delage

Debbie Sell

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







You might also like



Downloadable Citations