A104 PATIENT AND PUBLIC INVOLVEMENT (PPIN) IN IBD RESEARCH - A SCOPING REVIEW
Notice bibliographique
Résumé
Abstract Background Over the past 10 years, interest in patient and public involvement (PPIn) in research has grown. Several arguments support the engagement of patients as partners in the research process. Patients with lived experience of a condition can offer their knowledge to study design as experience-based experts, helping researchers incorporate patient-pertinent outcomes. PPIn has also been shown to boost patient enrolment and retention in clinical trials. Benefits, challenges, and best practices of PPIn have been examined in other fields. However, to date, no study has examined PPIn in inflammatory bowel disease (IBD) research. Many factors amenable to research involvement may impact IBD patients’ quality of life, including disease morbidity, complications, and efficacy/side effects of therapy. Aims This review aims to characterize methods of PPIn in IBD research and highlight themes relating to best practices, benefits, and challenges. Methods We ran a systematic search on MEDLINE, EMBASE, and Cochrane for all IBD research studies in which IBD patients were involved in the research process. PPIn included but was not limited to patient input in one of the following 3 stages: Study Design (prioritization of research topics, outcome selection, study tool development), Study Execution (recruitment, data collection & analysis), and Dissemination of Research. After abstract and full-text screening, 14 studies were selected. Results Patients were recruited for PPIn through IBD and patient organizations (7/14), outpatient clinics (4/14), tertiary care sites (2/14), and pre-existing patient advisory groups (1/14). The majority of studies (11/14) engaged patients in the development of study materials, which included a physical activity intervention for stoma patients, an IBD pregnancy decision aid, and a quality of life questionnaire. Two studies interviewed patients to determine comprehensibility of survey items and guide revisions. One study involved patients in data analysis and manuscript development. Most consultations were open-ended, including focus groups (8/14) and semi-structured interviews (3/14). According to study authors, PPIn helps guide IBD research priorities by focusing on patient-relevant issues. Authors also cited the role of PPIn in designing patient-friendly study tools. One challenge reported by 2 studies was that PPIn requires patients to have access to high-quality information and requires a significant time commitment, which may contribute to demographic biases. Conclusions The majority of IBD studies engaged patients in an open-ended format and were engaged in study design, particularly in developing study materials. Authors recommend continuous involvement of patients throughout the research process to address their research priorities. Funding Agencies None
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,066 | 0,175 |
| Méta-épidémiologie (sens strict) | 0,002 | 0,002 |
| Méta-épidémiologie (sens large) | 0,006 | 0,005 |
| Bibliométrie | 0,026 | 0,028 |
| Études des sciences et des technologies | 0,003 | 0,004 |
| Communication savante | 0,010 | 0,011 |
| Science ouverte | 0,002 | 0,006 |
| Intégrité de la recherche | 0,006 | 0,004 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,005 | 0,001 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».