Evidence map›Paper›PMID 39666584›Full record

ArticleJournal of global health2024

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

Niki Kouvroukoglou, Sanita Sandhu, Barbara Delage, Debbie Sell, Nicola Stock, Gareth Davies, Marina Campodonico, Bruce Richard, Zipporah Njeri Gathuya, Mekonen Eshete and 1 more

Abstract read
In one paragraph

Article in Journal of global health, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Niki KouvroukoglouMedical School, University of Edinburgh, Edinburgh, UK.
Sanita SandhuThe London Clinic, London, UK.
Barbara DelageSmile Train, New York, USA.
Debbie SellCentre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID), Great Ormond Street Hospital for Children NHS Foundation Trust and Speech@Home, London, UK.
Nicola StockCentre for Appearance Research, University of West England Bristol, Bristol, UK.
Gareth DaviesEuropean Cleft Organisation, Rijswijk, The Netherlands.
Marina CampodonicoFundacion Grantz, Santiago de Chile, Chile.
Bruce RichardCleft surgeon, Birmingham, UK.
Zipporah Njeri GathuyaThe Nairobi Hospital, Nairobi, Kenya.
Mekonen EsheteCleft Lip and Palate Program Yekatit 12 Hospital Medical College, Addis Ababa, Ethiopia.
Felicity V MehendaleGlobal Cleft Research Programme, Usher Institute, University of Edinburgh, Edinburgh, UK.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

Cleft LipCleft PalateGlobal HealthStakeholder ParticipationBiomedical ResearchHealth PrioritiesHumansSurveys and Questionnaires

Identifiers

PMID39666584
PMCPMC11636950

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.