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Recommendations for patient engagement in patient-oriented emergency medicine research

  • Patrick M. Archambault (a1) (a2) (a3), Colleen McGavin (a4), Katie N. Dainty (a5) (a6), Shelley L. McLeod (a7) (a8), Christian Vaillancourt (a9), Jacques S. Lee (a10), Jeffrey J. Perry (a9), François-Pierre Gauvin (a11) and Antoine Boivin (a11)...
Abstract
Objective

To make pragmatic recommendations on best practices for the engagement of patients in emergency medicine (EM) research.

Methods

We created a panel of expert Canadian EM researchers, physicians, and a patient partner to develop our recommendations. We used mixed methods consisting of 1) a literature review; 2) a survey of Canadian EM researchers; 3) qualitative interviews with key informants; and 4) feedback during the 2017 Canadian Association of Emergency Physicians (CAEP) Academic Symposium.

Results

We synthesized our literature review into categories including identification and engagement, patients’ roles, perceived benefits, harms, and barriers to patient engagement; 40/75 (53% response rate) invited researchers completed our survey. Among respondents, 58% had engaged patients in research, and 83% intended to engage patients in future research. However, 95% stated that they need further guidance to engage patients. Our qualitative interviews revealed barriers to patient engagement, including the need for training and patient partner recruitment.

Our panel recommends 1) an overarching positive recommendation to support patient engagement in EM research; 2) seven policy-level recommendations for CAEP to support the creation of a national patient council, to develop, adopt and adapt training material, guidelines, and tools for patient engagement, and to support increased patient engagement in EM research; and 3) nine pragmatic recommendations about engaging patients in the preparatory, execution, and translational phases of EM research.

Conclusion

Patient engagement can improve EM research by helping researchers select meaningful outcomes, increase social acceptability of studies, and design knowledge translation strategies that target patients’ needs.

Objectif

L’étude visait à formuler des recommandations pragmatiques sur les pratiques exemplaires en matière d’engagement des patients à la recherche en médecine d’urgence (MU).

Méthode

Un groupe formé d’experts en recherche en MU au Canada, de médecins et d’un patient en tant que partenaire de recherche a été formé dans le but d’élaborer des recommandations. Pour ce faire, le groupe a appliqué différentes méthodes : 1) une revue de littérature; 2) une enquête parmi les chercheurs en MU au Canada; 3) des entretiens de type qualitatif avec des informateurs clés; 4) une démarche de rétroaction durant le Symposium académique 2017 de l’Association canadienne des médecins d’urgence (ACMU).

Résultats

La revue de la littérature a permis de classer les éléments recueillis en différentes catégories : la recherche de patients partenaires et leur engagement; le rôle des patients; la perception des avantages et des inconvénients de l’engagement des patients ainsi que des obstacles à sa réalisation. Dans l’ensemble, 53 % (40/75) des chercheurs invités à participer à l’enquête ont rempli le questionnaire. Parmi les répondants, 58 % avaient déjà une expérience de l’engagement des patients à des études et 83 % avaient l’intention de se lancer dans cette voie. Toutefois, 95 % des répondants ont déclaré qu’ils avaient besoin davantage d’indications pour trouver des patients partenaires aptes et disposés à s’engager activement. Les entretiens de type qualitatif ont fait ressortir des obstacles à l’engagement des patients, dont le besoin de formation et de recrutement de patients en tant que partenaires de recherche. Devant cet état de faits, le groupe propose donc : 1) une recommandation générale concrète visant à susciter l’engagement des patients à la recherche en MU; 2) sept recommandations de nature politique afin d’aider l’ACMU à soutenir la formation d’un conseil national de patients; à faciliter l’élaboration, l’adoption et l’adaptation de matériel didactique, de lignes directrices et d’outils sur l’engagement des patients, et à favoriser l’engagement des patients à la recherche en MU; et 3) neuf recommandations pragmatiques sur l’engagement des patients durant les phases de préparation et de réalisation des études en MU ainsi que d’application des connaissances.

Conclusions

L’engagement des patients peut améliorer la recherche en MU en aidant les chercheurs à tenir compte de résultats significatifs pour les patients, accroître l’acceptabilité sociale des études et faciliter l’élaboration de stratégies d’application des connaissances qui répondent aux besoins des patients.

Copyright
Corresponding author
Correspondence to: Dr. Patrick Archambault, Centre intégré de santé et services sociaux de Chaudière-Appalaches, 143 rue Wolfe, Lévis, QC G6V 3Z1; Email: patrick.m.archambault@gmail.com
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