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

BACKGROUND: In 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 wor...

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Autores principales: Babatunde, Stella, Ahmed, Sadia, Santana, Maria Jose, Nielssen, Ingrid, Zelinsky, Sandra, Ambasta, Anshula
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10394768/
https://www.ncbi.nlm.nih.gov/pubmed/37528438
http://dx.doi.org/10.1186/s40900-023-00475-w
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author Babatunde, Stella
Ahmed, Sadia
Santana, Maria Jose
Nielssen, Ingrid
Zelinsky, Sandra
Ambasta, Anshula
author_facet Babatunde, Stella
Ahmed, Sadia
Santana, Maria Jose
Nielssen, Ingrid
Zelinsky, Sandra
Ambasta, Anshula
author_sort Babatunde, Stella
collection PubMed
description BACKGROUND: In 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. METHODS: The 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. RESULTS: A 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. CONCLUSIONS: Through 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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40900-023-00475-w.
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spelling pubmed-103947682023-08-03 Working together in health research: a mixed-methods patient engagement evaluation Babatunde, Stella Ahmed, Sadia Santana, Maria Jose Nielssen, Ingrid Zelinsky, Sandra Ambasta, Anshula Res Involv Engagem Research BACKGROUND: In 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. METHODS: The 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. RESULTS: A 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. CONCLUSIONS: Through 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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40900-023-00475-w. BioMed Central 2023-08-01 /pmc/articles/PMC10394768/ /pubmed/37528438 http://dx.doi.org/10.1186/s40900-023-00475-w Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
Babatunde, Stella
Ahmed, Sadia
Santana, Maria Jose
Nielssen, Ingrid
Zelinsky, Sandra
Ambasta, Anshula
Working together in health research: a mixed-methods patient engagement evaluation
title Working together in health research: a mixed-methods patient engagement evaluation
title_full Working together in health research: a mixed-methods patient engagement evaluation
title_fullStr Working together in health research: a mixed-methods patient engagement evaluation
title_full_unstemmed Working together in health research: a mixed-methods patient engagement evaluation
title_short Working together in health research: a mixed-methods patient engagement evaluation
title_sort working together in health research: a mixed-methods patient engagement evaluation
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10394768/
https://www.ncbi.nlm.nih.gov/pubmed/37528438
http://dx.doi.org/10.1186/s40900-023-00475-w
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