Patient engagement in research on dementia: Perceptions from researchers in a multidisciplinary research consortium
Notice bibliographique
Résumé
Abstract Background Patient ‘engagement’ or ‘involvement’ in health research refers to including people with lived experience (i.e. individuals with personal experience of a health issue and their friends, family and caregivers) in the research process – not as study subjects, but as collaborators in planning, conducting and communicating research. Patient engagement is being advanced by researchers, funding organisations, advocacy groups and others on both moral and methodological grounds. Although patient engagement in research on dementia is not new, it is becoming more common. Still, there are unresolved questions of how to incorporate, evaluate and adapt engagement activities for different types of research. Method We are reporting results of a survey of researchers who are members of the Canadian Consortium on Neurodegeneration in Aging (CCNA), conducted to understand their perceptions of engaging people with lived experience of dementia in research. Result There were 84 responses (27% response rate). Respondents included biomedical (n=10; 12%), clinical (n=35; 42%), health services (n=27; 32%) and social/cultural/environmental/population health (n=12; 14%) researchers. Overall, almost all (n=78; 93%) agreed that people with lived experience of dementia can contribute meaningfully to the research process. Nearly two thirds of respondents (n=54; 64%) indicated their research already included engagement activities and the most frequently reported motivations were to increase the quality and relevance of the research and empower people who have lived experience of dementia. They reported engagement activities took place most often in the context of knowledge translation, priority setting and study recruitment. Of those who indicated no current engagement activities (n=30; 36%), most were interested in opportunities for engagement and, for those who were not interested, the most common reason reported was that it was not relevant to their area of research. Limitations to these results include the low response rate that likely introduced some selection bias; researchers with an interest in engagement may have been more likely to respond. Conclusion Many CCNA researchers working in the area of dementia are engaging people with lived experience in their research. These data will be used to describe how researcher knowledge, attitudes and activities differ according to type of research.
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 | 0,134 | 0,206 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,001 |
| Méta-épidémiologie (sens large) | 0,001 | 0,001 |
| Bibliométrie | 0,003 | 0,003 |
| Études des sciences et des technologies | 0,019 | 0,014 |
| Communication savante | 0,016 | 0,010 |
| Science ouverte | 0,004 | 0,025 |
| Intégrité de la recherche | 0,005 | 0,009 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,003 | 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 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 ».