Evidence map›Paper›PMID 39267370›Full record

ArticleThe Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association2025

Involving Experts by Experience in Craniofacial Research.

Amanda Bates, Kenny Ardouin, Danielle McWilliams

Abstract read
In one paragraph

Article in The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association, 2025. 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. "What I Want You to Know": Adult Women's Stories of Cleft Lip and/or Palate.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2026
    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

3 authors.

Amanda BatesCentre for Health Services Studies, University of Kent, Canterbury, UK.ORCID 0000-0001-6370-752X
Kenny ArdouinSchool of Psychology, Speech & Hearing, University of Canterbury, Christchurch, New Zealand.ORCID 0000-0002-8105-3926
Danielle McWilliamsSalomon's Institute for Applied Psychology, Canterbury Christ Church University, Canterbury, UK.ORCID 0000-0002-1766-4175

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

Biomedical ResearchCraniofacial AbnormalitiesCaregiversHumansParentsResearch Designcleft lip and palatepsychosocial adjustmentquality of life

Identifiers

PMID39267370
PMCPMC12475029

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
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.