Browsing by Author "Zelinsky, Sandra"
Now showing 1 - 6 of 6
Results Per Page
Sort Options
- ItemOpen AccessERAS From the Patient Perspective(2016-10-08) Gill, Marlyn; Zelinsky, Sandra; Gillis, Chelsia; Nguyen, Susan
- ItemOpen AccessPatient-identified priorities for successful partnerships in patient-oriented research(2022-09-07) Santana, Maria J.; Duquette, D’Arcy; Fairie, Paul; Nielssen, Ingrid; Bele, Sumedh; Ahmed, Sadia; Barbosa, Tiffany; Zelinsky, SandraAbstract Albertans4HealthResearch, supported by the Alberta Strategy for Patient-Oriented Research Patient Engagement Team, hosted a virtual round table discussion to develop a list of considerations for successful partnerships in patient-oriented research. The group, which consists of active patient partners across the Canadian province of Alberta and some research staff engaged in patient-oriented research, considered advice for academic researchers on how to best partner with patients and community members on health research projects. The group identified four main themes, aligned with the national strategy for patient-oriented research (SPOR) patient engagement framework, highlighting important considerations for researchers from the patient perspective, providing practical ways to implement SPOR’s key principles: inclusiveness, support, mutual respect, and co-building. This commentary considers the process behind this engagement exercise and offers advice directly from active patient research partners on how to fulfill the operational patient engagement mandate. Academic research teams can use this guidance when considering how to work together with patient partners and community members.
- ItemOpen AccessThe Hidden Pathways of Chronic Illness(2013-09) Banerjee, Cyrene; Brehm, Gloria; Hanberg, Heather; Hylton,Chris; Maverley, Dorette; Swendson, Yvette; Zelinsky, Sandra
- ItemOpen AccessUnderstanding patient engagement in health system decision-making: a co-designed scoping review(2019-04-18) McCarron, Tamara L; Moffat, Karen; Wilkinson, Gloria; Zelinsky, Sandra; Boyd, Jamie M; White, Deborah; Hassay, Derek; Lorenzetti, Diane L; Marlett, Nancy J; Noseworthy, ThomasAbstract Background With healthcare striving to shift to a more person-centered delivery model, patient and family involvement must have a bigger role in shaping this. While many initiatives involving patients and family members focus on self-care, a broader understanding of patient participation is necessary. Ensuring a viable and sustainable critical number of qualified patients and family members to support this shift will be of utmost importance. The purpose of this study was to understand how health systems are intentionally investing in the training and skill development of patients and family members. Methods Patient co-investigators and researchers conducted a scoping review of the existing literature on methods adopted by healthcare systems to build the skills and capacity of patients to participate in healthcare decision-making using a recognized methodological framework. Six electronic databases were searched to identify studies. Two independent reviewers screened titles and abstracts and full-text papers for inclusion. The research team independently extracted data. Any disagreements were resolved by achieving consensus through discussion. Quantitative and qualitative content synthesis, as well as a quality assessment, was conducted. Results After eliminating duplicates, the search resulted in 9428 abstracts. Four hundred fifty-eight articles were reviewed and 15 articles were included. Four themes emerged: forums (33%), patient instructors (20%), workshops (33%), and co-design (13%). Four of the identified studies measured the impact and overall effectiveness of the respective programs. Examples of how patient and family members were supported (invested in) included advocacy training to support future involvement in engagement activities, a training program to conduct patient-led research, involvement in an immersive experience-based co-design initiative, and involvement in training pharmacy students. Overall, these studies found positive outcomes when patients and family members were recipients of these opportunities. Conclusions The results of this scoping review demonstrate that an evidence base around programs to advance patient engagement is largely absent. An opportunity exists for further research to identify strategies and measures to support patient engagement in healthcare decision-making.
- ItemOpen AccessUnderstanding Safe Surgery Checklist Experiences of Surgical Patients in Alberta(2014-03-25) Sheridan, Mary; Zelinsky, Sandra; Gill, Marlyn
- ItemOpen AccessWorking together in health research: a mixed-methods patient engagement evaluation(2023-08-01) Babatunde, Stella; Ahmed, Sadia; Santana, Maria J.; Nielssen, Ingrid; Zelinsky, Sandra; Ambasta, AnshulaAbstract 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.