Working together in health research: a mixed-methods patient engagement evaluation
| dc.contributor.author | Babatunde, Stella | |
| dc.contributor.author | Ahmed, Sadia | |
| dc.contributor.author | Santana, Maria J. | |
| dc.contributor.author | Nielssen, Ingrid | |
| dc.contributor.author | Zelinsky, Sandra | |
| dc.contributor.author | Ambasta, Anshula | |
| dc.date.accessioned | 2023-08-06T00:02:37Z | |
| dc.date.available | 2023-08-06T00:02:37Z | |
| dc.date.issued | 2023-08-01 | |
| dc.date.updated | 2023-08-06T00:02:36Z | |
| dc.description.abstract | Abstract 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. | |
| dc.description.abstract | Plain English summary Patient research partners contribute their valuable knowledge, lived experiences, and skills in health research projects. However, research looking to understand how patient partners and researchers can work together in a meaningful and collaborative way remains limited. We aim 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. We used a mixed methods design as it provided the opportunity to gather more insights from the RePORT PAC members’ engagement experiences throughout the study and provide a deeper understanding on the barriers and facilitators to working together. We involved diverse patient research partners, clinicians/researchers, patient engagement organization team members and other stakeholders from the RePORT PAC. All PAC members were invited to complete an anonymous online survey as well as a semi-structured interview. Patient research partners appreciated the supports (e.g. training, compensation) provided throughout the project. Most PAC members felt that their views and opinions were heard, which further facilitated a collaborative team environment. There were many suggestions for improving diversity and collaboration provided by PAC members during the semi-structured interviews. 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 in our research partnership and recommendations for patient-oriented research projects more broadly, going forward. | |
| dc.identifier.citation | Research Involvement and Engagement. 2023 Aug 01;9(1):62 | |
| dc.identifier.uri | https://doi.org/10.1186/s40900-023-00475-w | |
| dc.identifier.uri | https://hdl.handle.net/1880/116838 | |
| dc.identifier.uri | https://dx.doi.org/10.11575/PRISM/41680 | |
| dc.language.rfc3066 | en | |
| dc.rights.holder | The Author(s) | |
| dc.title | Working together in health research: a mixed-methods patient engagement evaluation | |
| dc.type | Journal Article |