The experience of patient partners in research: a qualitative systematic review and thematic synthesis
Notice bibliographique
Résumé
CONTEXT: Patient engagement in research consists in involving patients as partners across the research cycle. This practice has quickly become an international standard, with funding bodies actively encouraging it. As the increased incentive to engage patients can lead to tokenistic partnerships, it is important to consider the experiences of patient-partners. OBJECTIVE: To synthesize the qualitative literature on the experience of patients as partners in research. DESIGN: A systematic review of the literature with thematic synthesis was realized, guided by the framework developed by Thomas and Harden (Bmc Med Res Methodol 8: 45, 2008). DATA COLLECTION: A search strategy was developed to encompass keywords relating to patient-partners in research, their experience, and the qualitative nature of the target studies. 10 databases were searched using the EBSCO-host engine, along with the Scopus engine to include EMBASE. The search results were screened for the following inclusion criteria: articles written in English; articles reporting on the experience of patient-partners in research; qualitative studies or mixed-methods studies with a distinct qualitative section. ANALYSIS: Included articles were charted for general information. The CASP qualitative checklist was used for critical appraisal. The "results" section of each article was coded line by line. Codes were aggregated inductively to form descriptive themes and analytical themes, in order to synthesize the ideas found in the selection of articles. RESULTS: The initial search yielded 10,222 results. After the removal of duplicates, 5534 titles and abstracts were screened, 88 full-text reports were evaluated, and 41 studies were included. Articles reporting on these studies were published between 2005 and 2020. Seven themes emerged from the analysis: "motivations to engage in research", "activities in patient engagement", "structure", "competence", "team dynamics", "impacts on broader life", and "illness". Articles reported varying degrees of perceived impact on research and satisfaction concerning the level of engagement. The importance of power differentials and team dynamics were widely stated. CONCLUSIONS: Findings provide an in-depth view of the experiences of patient-partners in research. Most articles reported a generally positive experience, but challenges and pitfalls of patient engagement were identified. This will serve research teams by highlighting good practices and possible improvements.
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 | 0,165 | 0,187 |
| Méta-épidémiologie (sens strict) | 0,002 | 0,002 |
| Méta-épidémiologie (sens large) | 0,006 | 0,004 |
| Bibliométrie | 0,027 | 0,030 |
| Études des sciences et des technologies | 0,004 | 0,005 |
| Communication savante | 0,006 | 0,008 |
| Science ouverte | 0,004 | 0,008 |
| Intégrité de la recherche | 0,003 | 0,002 |
| 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 ».