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Patients’ engagement in primary care research: a case study in a Canadian context

PLAIN ENGLISH SUMMARY: Patient engagement in primary care research is an increasingly common requirement, as it helps make research more relevant to patients and therefore more valuable. However, there is limited evidence about the outcomes on engagement and actually how it affects research. In Cana...

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Autores principales: Bhati, Divya Kanwar, Fitzgerald, Michael, Kendall, Claire, Dahrouge, Simone
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7604947/
https://www.ncbi.nlm.nih.gov/pubmed/33292731
http://dx.doi.org/10.1186/s40900-020-00238-x
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author Bhati, Divya Kanwar
Fitzgerald, Michael
Kendall, Claire
Dahrouge, Simone
author_facet Bhati, Divya Kanwar
Fitzgerald, Michael
Kendall, Claire
Dahrouge, Simone
author_sort Bhati, Divya Kanwar
collection PubMed
description PLAIN ENGLISH SUMMARY: Patient engagement in primary care research is an increasingly common requirement, as it helps make research more relevant to patients and therefore more valuable. However, there is limited evidence about the outcomes on engagement and actually how it affects research. In Canada, the Canadian Institutes of Health Research has a Strategy for Patient-Oriented Research (SPOR), which in 2016 funded Ontario’s INSPIRE-PHC centre of excellence and its Patient Engagement Resource Centre (PERC). PERC conducted an online survey of the three INSPIRE-PHC studies that engaged patients to guide their research. We found that patient partners (PPs) were positive about their experience during research meetings, the value of collaboration, and the support that was provided. They were more involved in early stages of their research projects than in ongoing research activities. PPs valued their experience and also felt they had improved the research process and outcomes. This case study showed how PPs perceive their roles, but a more diverse group of PPs might have more differences in their experience. ABSTRACT: Background Patient engagement in primary care research is increasing and is now an expectation in many countries and funding agencies. In Canada, the Canadian Institutes of Health Research (CIHR) has mandated that patients be included as partners to guide the research process. Ontario’s Patient Engagement Resource Centre (PERC) was established in 2016 by the INNOVATIONS STRENGTHENING PRIMARY HEALTH CARE THROUGH RESEARCH (INSPIRE-PHC), one of 12 centres of excellence in the province funded under the CIHR’s Strategy for Patient-Oriented Research (SPOR) initiative. PERC’s mission is to support the authentic engagement of patients in primary care research. The present case study examines patients’ experience of engagement in INSPIRE-PHC research studies. Methods PERC conducted a web-based evaluation survey across the three INSPIRE-PHC studies that engaged patient partners (PPs). We used data collection tools developed by McMaster University (the Public and Patient Engagement Evaluation Tool (PPEET)) and the Patient-Centred Outcomes Research Institute (Ways of Engaging- ENgagement ACtivity Tool (WE-ENACT)) to assess patient experience and areas of involvement. These included both closed- and open-ended questions. Results The quantitative data showed that PPs were positive about their experience during research meetings, the value of collaboration, and the support that was provided to facilitate engagement. Most of them were highly involved in the initial stages of their research projects but much less involved in operational activities. The qualitative findings showed that, overall, PPs valued their experience, felt prepared to contribute and that their contributions were welcomed. In particular, they considered that they had improved the research process and outcomes. The majority also reported that they had learned from the experience and found it valuable. Conclusions This case study shows that patients engaged in three primary care research studies found the experience to be positive and felt that they had contributed to the research. This study adds to the literature on the evaluation of patient engagement in primary health care research. However, a study of a more diverse sample of PPs might elucidate differences in experience that could enrich future patient engagement activities.
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spelling pubmed-76049472020-11-02 Patients’ engagement in primary care research: a case study in a Canadian context Bhati, Divya Kanwar Fitzgerald, Michael Kendall, Claire Dahrouge, Simone Res Involv Engagem Research Article PLAIN ENGLISH SUMMARY: Patient engagement in primary care research is an increasingly common requirement, as it helps make research more relevant to patients and therefore more valuable. However, there is limited evidence about the outcomes on engagement and actually how it affects research. In Canada, the Canadian Institutes of Health Research has a Strategy for Patient-Oriented Research (SPOR), which in 2016 funded Ontario’s INSPIRE-PHC centre of excellence and its Patient Engagement Resource Centre (PERC). PERC conducted an online survey of the three INSPIRE-PHC studies that engaged patients to guide their research. We found that patient partners (PPs) were positive about their experience during research meetings, the value of collaboration, and the support that was provided. They were more involved in early stages of their research projects than in ongoing research activities. PPs valued their experience and also felt they had improved the research process and outcomes. This case study showed how PPs perceive their roles, but a more diverse group of PPs might have more differences in their experience. ABSTRACT: Background Patient engagement in primary care research is increasing and is now an expectation in many countries and funding agencies. In Canada, the Canadian Institutes of Health Research (CIHR) has mandated that patients be included as partners to guide the research process. Ontario’s Patient Engagement Resource Centre (PERC) was established in 2016 by the INNOVATIONS STRENGTHENING PRIMARY HEALTH CARE THROUGH RESEARCH (INSPIRE-PHC), one of 12 centres of excellence in the province funded under the CIHR’s Strategy for Patient-Oriented Research (SPOR) initiative. PERC’s mission is to support the authentic engagement of patients in primary care research. The present case study examines patients’ experience of engagement in INSPIRE-PHC research studies. Methods PERC conducted a web-based evaluation survey across the three INSPIRE-PHC studies that engaged patient partners (PPs). We used data collection tools developed by McMaster University (the Public and Patient Engagement Evaluation Tool (PPEET)) and the Patient-Centred Outcomes Research Institute (Ways of Engaging- ENgagement ACtivity Tool (WE-ENACT)) to assess patient experience and areas of involvement. These included both closed- and open-ended questions. Results The quantitative data showed that PPs were positive about their experience during research meetings, the value of collaboration, and the support that was provided to facilitate engagement. Most of them were highly involved in the initial stages of their research projects but much less involved in operational activities. The qualitative findings showed that, overall, PPs valued their experience, felt prepared to contribute and that their contributions were welcomed. In particular, they considered that they had improved the research process and outcomes. The majority also reported that they had learned from the experience and found it valuable. Conclusions This case study shows that patients engaged in three primary care research studies found the experience to be positive and felt that they had contributed to the research. This study adds to the literature on the evaluation of patient engagement in primary health care research. However, a study of a more diverse sample of PPs might elucidate differences in experience that could enrich future patient engagement activities. BioMed Central 2020-11-01 /pmc/articles/PMC7604947/ /pubmed/33292731 http://dx.doi.org/10.1186/s40900-020-00238-x Text en © The Author(s) 2020 Open AccessThis 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/. The Creative Commons Public Domain Dedication waiver (http://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 Article
Bhati, Divya Kanwar
Fitzgerald, Michael
Kendall, Claire
Dahrouge, Simone
Patients’ engagement in primary care research: a case study in a Canadian context
title Patients’ engagement in primary care research: a case study in a Canadian context
title_full Patients’ engagement in primary care research: a case study in a Canadian context
title_fullStr Patients’ engagement in primary care research: a case study in a Canadian context
title_full_unstemmed Patients’ engagement in primary care research: a case study in a Canadian context
title_short Patients’ engagement in primary care research: a case study in a Canadian context
title_sort patients’ engagement in primary care research: a case study in a canadian context
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7604947/
https://www.ncbi.nlm.nih.gov/pubmed/33292731
http://dx.doi.org/10.1186/s40900-020-00238-x
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