Working together in health research: a mixed-methods patient engagement evaluation

Research Involvement and Engagement

Research

Stella Babatunde¹  Anshula Ambasta²  Ingrid Nielssen³  Sandra Zelinsky³  Sadia Ahmed⁴  Maria Jose Santana⁴ 

[1] Alberta Strategy for Patient-Oriented Research (AbSPORU) Patient Engagement Team, Calgary, Canada;Department of Anesthesiology, Pharmacology and Therapeutics, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada;Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada;Alberta Strategy for Patient-Oriented Research (AbSPORU) Patient Engagement Team, Calgary, Canada;Department of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada;Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada;Alberta Strategy for Patient-Oriented Research (AbSPORU) Patient Engagement Team, Calgary, Canada;

关键词: Patient engagement;    Patient research partners;    Patient-oriented research;    Patient advisory council;   

DOI  :  10.1186/s40900-023-00475-w

 received in 2023-05-02, accepted in 2023-07-20,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundIn patient-oriented research (POR), patients contribute their valuable knowledge and lived-experiences to work together as active research partners at all stages of the health research cycle. However, research looking to understand how patient research partners (PRPs) and researchers work together in meaningful and collaborative ways remains limited. This study aims to evaluate patient engagement with the RePORT Patient Advisory Council (PAC) and to identify barriers and facilitators to meaningful patient engagement encountered within research partnerships involving patient research partners and researchers.MethodsThe RePORT PAC members included nine PRPs and nine researchers (clinician-researchers, research staff, patient engagement experts) from both Alberta and British Columbia. All members were contacted and invited to complete an anonymous online survey (Public and Patient Engagement Evaluation (PPEET) tool) at two different project times points. The PAC was invited for a semi-structured interview to gain in-depth understanding of their experiences working together. Interviews were audio-recorded, transcribed, and the data was thematically analyzed with the support of a qualitative analysis software, NVivo.ResultsA total of nine PRPs (100%) and three researchers (33%) participated in the baseline survey in February 2022 while six PRPs (67%) responded and three researchers (33%) completed the follow up survey in May 2022. For the semi-structured interviews, nine PRPs (100%) and six researchers (67%) participated. According to the survey results, PAC members agreed that the supports (e. g. training, compensation) needed to contribute to the project were available throughout the project. The survey responses also showed that most members of the PAC felt their opinions and views were heard. Responses to the survey regarding diversity within the PAC were mixed. There were many suggestions for improving diversity and collaboration provided by PAC members during the semi-structured interviews. PAC members mentioned that PAC PRPs informed the co-development of research materials such as recruitment posters and interview guides for the RePORT study.ConclusionsThrough fostering a collaborative environment, we can engage a diverse group of people to work together meaningfully in health research. We have identified what works well, and areas for improvement within our research partnership involving PRPs and researchers as well as recommendations for POR projects more broadly, going forward.

【 授权许可】

CC BY   
© The Author(s) 2023

【 图 表 】

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