Patient and public involvement and engagement in methodology research: process, experiences, and recommendations from the SPIRIT- and CONSORT-Surrogate project
Notice bibliographique
Résumé
BACKGROUND: While there are increasing calls for Public and Patient Involvement and Engagement (PPIE) in methodology research, including the development of reporting guidelines, practices continue to emerge. This paper reports on the process, experiences, reflections, and recommendations of both the PPIE partners and other researchers participating in the development of (Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT) and Consolidated Standards of Reporting Trials (CONSORT)-Surrogate reporting guidelines. METHODS: Development of the SPIRIT- and CONSORT-Surrogate guidelines involved four phases: (1) literature reviews; (2) an e-Delphi survey; (3) a consensus meeting, and (4) knowledge translation. PPIE was integrated in Phases 2, 3 and 4. An encompassing budgeted PPIE strategy detailing involvement in all project phases was prepared and implemented by researchers and PPIE partners. Implementation included a learning workshop (attended by 19 PPIE partners) to build PPIE partners’ capacity and confidence to participate in the e-Delphi survey (Phase 2) and the invitation of four PPIE partners to the consensus meeting (Phase 3). Experiences and reflections of PPIE in the project, based on feedback surveys from PPIE partners participating in the project and reflective notes from meetings, were used to formulate recommendations. RESULTS: In total, 19 PPIE partners took part in the e-Delphi survey (Phase 2), four joined the consensus meeting (Phase 3), and consequently co-authored the guidelines and contributed to the development of an educational animation video (Phase 4). Partners felt that facilitators for involvement in Phase 2 included a learning workshop, financial compensation, support during e-Delphi survey participation (such as a glossary and help texts) and for Phase 3, the main facilitator was allowing partners to contribute first during the consensus meeting. The PPIE partners who joined the consensus meeting (Phase 3) presented the patient perspective; reminded researchers of why the project was important; helped with clarification of issues; corrected grammar; suggested strategies to disseminate and implement the extensions; and created humour. Reflecting on the involvement, both the PPIE partners and researchers felt it was valuable to the project. CONCLUSIONS: Based on the experiences, we make six recommendations for integrating PPIE in projects to develop reporting guidelines: involve early; involve with a plan and layered approach; involve meaningfully in a genuine way; involve with support and in safe spaces; involve with reflection and feedback; and involve with a budget to compensate for time and effort.
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 distillée sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.
Scores Codex et Gemma par catégorie
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,029 | 0,001 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,000 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,005 | 0,001 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,000 | 0,002 |
| Intégrité de la recherche | 0,000 | 0,002 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,000 | 0,000 |
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 tête enseignante, 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 ».