The role of patients, caregivers, and communities in Learning Health Systems: a narrative review
Notice bibliographique
Résumé
Learning Health Systems (LHSs) seek to continuously generate and apply evidence in clinical practice. Most Canadian LHS models emphasize engagement with patients, caregivers, and communities (herein contributors). Yet, there is limited guidance about how engagement works in these dynamic systems and how it may differ from engagement in other settings, for example patient-oriented research and quality improvement. This review examines engagement activities in existing and emerging LHSs for insights into the roles that contributors play in creating patient-oriented and equitable LHSs. A narrative review was conducted using the PerSPEcTiF framework. Search terms were identified for three domains: contributors, LHSs operating in direct patient care settings, and active engagement. Four databases (PubMed-MEDLINE, CINAHL, PsycINFO, Embase) were searched in December 2022. Articles were screened using a domain-based rubric and sampled for richness. Data were extracted including who was engaged, when, where, and how. Engagement activities were coded inductively, then deductively using the International Association for Public Participation (IAP2) Spectrum of Public Participation. An advisory group, including a Patient Partner, provided input at several stages in the project. Thirty-six articles describing engagement in 30 LHSs were included. In all, 192 engagement activities were coded to create a taxonomy of engagement; 139 activities were also coded to the IAP2 Spectrum. Contributors' influence over decision-making was often unclear or limited, with engagement frequently occurring after LHS implementation. However, LHSs also provided contributors with opportunities to engage in deliberative system design and effect change through distributed leadership. Ten contributor roles were synthesized, serving three functions: "System Shapers" (designing and defining LHSs), "Community and Capacity Builders" (expanding and supporting LHSs), and "Implementers" (hands-on efforts). This review provides an overview of engagement in LHSs, demonstrating how these practices can both build on and be constrained by engagement traditions in patient-oriented research and quality improvement. Findings offer a starting point for designing meaningful contributor roles and highlight opportunities to reimagine engagement practices by embedding contributors within systems and engaging communities beyond patient care settings.
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 | 0,005 | 0,000 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,003 | 0,000 |
| Bibliométrie | 0,000 | 0,001 |
| Études des sciences et des technologies | 0,002 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,001 | 0,000 |
| 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 ».