Engaging patients and the public in Health Research: experiences, perceptions and training needs among Manitoba health researchers
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Notice bibliographique
Résumé
Abstract Background The significance of patient and public engagement is increasingly recognized in health research, demonstrated by explicit requirements for patient and public engagement by funding agencies and journals. Such requirements have charged health researchers with leading patient and public engagement efforts, but evidence suggests that this practice is still evolving. Little research has explored the experiences and training needs of health researchers. This study aimed to establish a baseline understanding of the experiences, perceptions and training needs of health researchers in engaging patients and the public in health research in the context of Manitoba. Methods A cross-sectional 50-item questionnaire was distributed using a multi-phase purposive sampling strategy targeting health researchers in Manitoba, Canada. Data was summarized using frequencies, percentages and analyzed using chi-square testing. A local patient engagement advisory group was consulted at the interpretation stage of the study to obtain feedback and input on the findings and their implications. Results Responses from 53 health researchers were included. Most participants had engaged patients and the public in their own research ( n = 43, 81.1%). Those who had engaged reported having some ( n = 19, 44.2%), extensive ( n = 14, 32.6%) or a little ( n = 10, 23.3%) experience with this process. Most engaged at the levels of inform, consult or involve (81.3, 64.6 and 54.2% respectively), while fewer engaged at the collaborate (37.5%) or patient-directed levels (12.5%). Recruitment occurred using a number of approaches and engagement occurred at various phases of the research process, while main groups engaged were patients ( n = 38, 82.6%) and families/caregivers ( n = 25, 54.4%). Barriers to engaging patients and the public in health research included funding, time, compensation, logistics, recruitment, motivation at both the patient and researcher level, and skills of researchers to engage. Researchers reported an overwhelming need and interest for supports, funding and training to effectively engage patients and the public in health research. Consultation with the patient advisory group provided further insight on study findings and areas for future research. Conclusions Participating Manitoba health researchers engaged patients and the public in health research at multiple, but typically lower levels of involvement. Findings highlight the barriers to effective, authentic and meaningful patient and public engagement and support the need for targeted training, supports, funding and time for health researchers.
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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 | 0,083 | 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 | 0,007 | 0,001 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,000 | 0,001 |
| Intégrité de la recherche | 0,000 | 0,004 |
| 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 découle