Health researchers' experience collaborating with patient partners: a qualitative study
Notice bibliographique
Résumé
Patient-oriented research (POR) and patient engagement (PE) have been increasingly adopted over recent decades, as they generate many positive academic and patient outcomes within various health research fields. While there has been research on the barriers and challenges experienced by patient partners (PPs), we know little about the experiences of the health researchers working with them. It is therefore important to gain a better understanding of the experiences of health researchers who work with PPs to improve their collaboration. This study, which was initiated by PPs themselves, aims to enhance the understanding of health researchers’ experiences regarding the challenges of working with PPs. This qualitative descriptive study involved 20 semi-structured interviews with researchers from various health science fields, such as primary care and general medicine, public health and health policy, specialized medical fields (i.e. cancerology, endocrinology, psychiatry, gerontology), biomedical engineering and medical technologies, and neuroscience. Participants, including researchers and research coordinators, were recruited through purposive sampling via email, newsletters, and social media, with their participation being voluntary and uncompensated. Thematic analysis was conducted over multiple steps, and the interview transcripts were coded to identify the main themes and subthemes relevant to the study’s aims. The analysis resulted in six main themes: 1) PP individual and health-related challenges; 2) institutional barriers to PP involvement; 3) challenges in genuine PP involvement; 4) collaboration challenges in research projects; 5) time constraints in research projects; and 6) PP recruitment and representation issues. The findings of this study provide an in-depth view of the challenges experienced by health researchers who have involved PPs in their projects. However, it is important to highlight that this study goes beyond simply identifying challenges. These challenges are often interconnected and complex and influence one another in such a way that controlling for one element may cause further constraints in another. This article provides recommendations regarding current practices, ethics-related questioning, and time-related challenges, which will be useful for the continued meaningful involvement of PPs in research teams and for navigating the challenges. Patient-oriented research (POR) and patient engagement (PE) generate many positive academic and patient outcomes within various fields of health research and have gained much recognition in recent decades. Researchers who conduct POR and work with patient partners (PPs) benefit from valuable insights into the subject at hand through their rich encounters with PPs. Meanwhile, there remain some challenges and grey areas within POR—specifically, PE—that need to be explored. Thus, this article, which was initiated by PPs themselves, aimed to explore the barriers and challenges experienced by health researchers collaborating with PPs. Thematic analysis was conducted using 20 semi-structured interviews. The analysis revealed six main themes and their subcategories: PP individual and health-related challenges, institutional barriers to PP involvement, challenges in genuine PP involvement, collaboration challenges in research projects, time constraints in research projects, and PP recruitment and representation issues. These challenges are often interconnected, complex, and influence one another in such a way that controlling for one element may cause further constraints in another. Suggestions regarding current practices, ethics-related matters, and time-related challenges are discussed with the hope of encouraging the inclusion of PPs in research teams and guiding the navigation of the challenges.
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 | 0,019 | 0,000 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,001 | 0,002 |
| Études des sciences et des technologies | 0,005 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,000 | 0,001 |
| 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 ».