https://www.patientengagementinresearch.ca/science-of-engagement-studies daily 0.75 2024-03-04 https://www.patientengagementinresearch.ca/science-of-engagement-studies/patient-and-care-partners-perspectives-on-engagement monthly 0.5 2024-03-04 https://images.squarespace-cdn.com/content/v1/62103d1c31b3c41f4ef2f077/1709578017080-LC3MLJK4WEUSOSY8Q8G2/image-asset.jpeg Science of Engagement Studies - Patient and Care Partners’ Perspectives on Engagement - Exploring patient and caregiver perceptions of the meaning of the patient partner role: A qualitative study Study aims: To explore patient partners’ motivations for engagement and understanding of their role. What we did: We interviewed 13 patient partners about their motivations for engagement and understanding of their roles. Themes were generated from the interview response to meet the study aims. What we found: Sharing the lived patient and caregiver experience was central to how most patient partners defined their role and its purpose, value, and responsibilities. We also identified four other categories of motivations for becoming a patient partner and other contributions that patient partners make to research. Finally, interviews highlighted different types of meanings that could be attached to the title of “patient partner.” Based on our findings, it is very important that academic researchers and patient partners take the time to discuss and understand each other’s underlying motivations for partnering and their thoughts on the purpose, value, and responsibilities of the patient partner role. https://www.patientengagementinresearch.ca/science-of-engagement-studies/future-directions-for-patient-engagement monthly 0.5 2024-03-04 https://images.squarespace-cdn.com/content/v1/62103d1c31b3c41f4ef2f077/1709389587684-MRFV9GXWARRRUYCZGTDW/image-asset.jpeg Science of Engagement Studies - Future Directions for Patient Engagement - Future directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers Study aims: To identify future directions for Canadian patient engagement in research and discusses its findings in the context of the international literature. What we did: A multi-meeting pan-Canadian virtual workshop. Thirty participants attended four, 1.5–3h virtual meetings. Participants discussed the current and preferred future states of Canadian patient engagement in research. Themes were generated from conversations that occurred in the workshop. What we found: 10 target areas for improving Canadian patient engagement in research (systemic integration; academic culture; engagement networks; funding models; compensation models; engagement processes; awareness; diversity and recruitment; training, tools and education; evaluation and impact). https://www.patientengagementinresearch.ca/science-of-engagement-studies/engaging-patients-and-care-partners-in-data-analysis-and-synthesis monthly 0.5 2024-03-04 https://images.squarespace-cdn.com/content/v1/62103d1c31b3c41f4ef2f077/1709586118457-O5MX1PHWWJW7OLX2JOLY/image-asset.jpeg Science of Engagement Studies - Engaging Patients and Care Partners in Data Analysis and Synthesis - Elevating the Uses of Storytelling Methods Within Indigenous Health Research: A Critical, Participatory Scoping Review Study aims: to examine how storytelling has been used as a method in Indigenous health research on Turtle Island (North America), Australia, and Aotearoa (New Zealand). What we did: Our collaborative team of Indigenous and non-Indigenous researchers, and Indigenous Elders, patients, healthcare providers, and administrators, conducted a participatory, scoping review. We searched key databases and online sources for studies that involved Indigenous participants and used storytelling as a method in health research. What we found: We included 178 articles and found a diverse array of storytelling approaches and adaptations, along with exemplary practices and problematic omissions. Our findings can guide respectful storytelling research that bridges divergent Indigenous and Western knowledge systems, to decolonize health research. https://images.squarespace-cdn.com/content/v1/62103d1c31b3c41f4ef2f077/1709586734599-QUU8IFK8NLMCD0ICC99Z/image-asset.jpeg Science of Engagement Studies - Engaging Patients and Care Partners in Data Analysis and Synthesis - A Virtual, Multi-Session Workshop Model for Integrating Patient and Public Perspectives in Research Analysis and Interpretation Study aims: To provide a virtual workshop model for integrating patient and public stakeholder perspectives in data analysis and interpretation. What we did: Our model involves four virtual workshop sessions held on separate days, each achieving the unique goals of (a) establishing participants’ technological literacy within the virtual platform, (b) obtaining responses to the research question, (c) introducing participant perspectives into research analysis and interpretation, and (d) prioritizing research findings or future research agendas. What we found: This paper contributes toward a toolkit for patient engagement in research. Our model could be applied in research areas where there is currently minimal patient engagement. We also provide a practical approach to engaging with patients virtually, with a specific discussion of equity, diversity, and inclusion. https://images.squarespace-cdn.com/content/v1/62103d1c31b3c41f4ef2f077/1709585964170-O6XWAFGQTVECEP0HG7QO/image-asset.jpeg Science of Engagement Studies - Engaging Patients and Care Partners in Data Analysis and Synthesis - Protocol for a scoping review to map patient engagement in scoping reviews Study aims: To describe the protocol of a scoping review which will examine how patients and caregivers have been engaged as part of past scoping reviews, and inform the development of a unifying methodology. What we did: We have developed a protocol for a scoping review of methods used to engage patients and caregivers in scoping reviews of health research. Two patients will be engaged as collaborators throughout this review. We will also consult with patients, caregivers, and researchers upon completion of preliminary analyses. Expected outcomes: We anticipate that our scoping review will provide guidance for researchers seeking to involve health care stakeholders as co-producers of scoping reviews. https://www.patientengagementinresearch.ca/science-of-engagement-studies/activities-and-impacts-of-engagement monthly 0.5 2024-03-04 https://images.squarespace-cdn.com/content/v1/62103d1c31b3c41f4ef2f077/1709582878312-DODR7HBWTBNVVHVDR70T/image-asset.jpeg Science of Engagement Studies - Activities and Impacts of Patient Engagement - Activities and impacts of patient engagement in CIHR SPOR funded research: A cross‑sectional survey of academic researcher and patient partner experiences Study aims: To describe engagement activities and perceived impacts of projects funded by the Strategy for Patient-Oriented Research (SPOR). What we did: We surveyed 66 academic researchers and 20 patient partners who were involved in research projects across 13 SPOR funding calls (2014–2019). Thematic analysis was used to describe engagement activities and impacts. What we found: Patient partners were engaged in seven types of activities across the research cycle: (a) sharing experiences/giving advice, (b) identifying the research focus/methods, (c) developing/revising aspects of the project, (d) conducting research activities, (e) study participation, (f ) presenting on behalf of the project, and (g) other grant development or knowledge translation activities. Engagement was associated with six different types of impacts related to knowledge, outputs, or directions being (a) created, (b) moulded, (c) confirmed, or (d) chosen/prioritized, (e) perceived success of the research, and (f ) minimal/negative impacts on the research. https://www.patientengagementinresearch.ca/science-of-engagement-studies/models-and-frameworks-1 monthly 0.5 2024-03-04 https://images.squarespace-cdn.com/content/v1/62103d1c31b3c41f4ef2f077/1a2acc09-249a-4b44-9e12-122343c9af42/Screen+Shot+2024-03-04+at+3.23.00+PM.png Science of Engagement Studies - Models and Frameworks - Scoping review of models and frameworks of patient engagement in health services research Study aims: To count and describe the elements that overlap and diverge between models and frameworks of patient engagement in health services research. Our specific research question was ‘what are the elements that underlie models and frameworks of patient engagement in health services research?’ What we did: We conducted a scoping review of six electronic databases. We included published and unpublished literature that presented (a) models or frameworks (b) of patient engagement (c) in health services research. What we found: We included 14 models and frameworks. These models and frameworks had 18 overlapping and 57 diverging elements, that were organized into six conceptual categories (ie, principles, foundational components, contexts, actions, levels and outcomes) and spanned intrapersonal, interpersonal, process, environmental, and health systems and outcomes domains. Because there is little overlap between models and frameworks, researchers should consider the ‘fit’ of each element, by conceptual category and domain, within the context of their study. https://www.patientengagementinresearch.ca/applications-of-engagement daily 0.75 2024-03-04 https://www.patientengagementinresearch.ca/applications-of-engagement/pharmacy-research monthly 0.5 2024-03-04 https://www.patientengagementinresearch.ca/applications-of-engagement/healthcare-service-re-design monthly 0.5 2024-03-04 https://images.squarespace-cdn.com/content/v1/62103d1c31b3c41f4ef2f077/1709578555723-ENO1YIOJ5PVFSVN2OQCF/image-asset.jpeg Applications of Engagement - Healthcare Service Re-Design - Multistakeholder Recommendations for Supporting Patients and Families Transitioning From Paediatric to Adult Congenital Heart Disease Care Study aims: Existing Congenital Heart Disease (CHD) transition programmes have not included patients, caregivers, and health care providers as partners in their development. This study aimed to develop recommendations for a CHD transition programme driven by lived and clinical experiences. What we did: We engaged adult and paediatric people living with CHD, their caregivers, and CHD health care providers as members of the research team. We also consulted members of these stakeholder groups through a series of 3 virtual workshops. What we found: Information, education, and support for self-management and knowledge are required for people living with CHD. Caregivers require information, education, and support to build capacity in people living with CHD and navigate their new role in their loved ones’ life. The health care team should provide this information and education. Peer support should be offered when people living with CHD are 15-22 years of age. This information, education, and support should be individualized, navigate limitations, build over time, have multimodal options, and be available virtually or in person. https://images.squarespace-cdn.com/content/v1/62103d1c31b3c41f4ef2f077/1709584955112-0SGANDD755Q1YA0EVK5M/image-asset.jpeg Applications of Engagement - Healthcare Service Re-Design - Putting patient value first: Using a modified nominal group technique for the implementation of enhanced recovery after cardiac surgery recommendations Study aims: To explore, from a patient and caregiver perspective, the priority of implementing the Enhanced Recovery After Cardiac Surgery (ERAS-CS) guidelines to optimize the care of patients undergoing cardiac surgery. What we did: Five patients who had undergone cardiac surgery and two caregivers ranked ERAS-CS recommendations within 3 time points (pre-operative, intra-operative, and post-operative) and across 2 to 3 voting rounds. Final round rankings were used to determine relative priorities. What we found: Patient engagement tools, surgical site infection reduction, and postoperative systematic delirium screening were the top-ranked ERAS-CS recommendations in the pre-operative, intra-operative, and post-operative time points, respectively. Exploring patient and caregiver priorities may provide important insights to guide the healthcare team with with developing and implementing clinical pathways. https://www.patientengagementinresearch.ca/applications-of-engagement/patient-centered-care monthly 0.5 2024-03-04 https://images.squarespace-cdn.com/content/v1/62103d1c31b3c41f4ef2f077/1709590601478-6EU2AOLG2M1FQ18IFDWC/image-asset.jpeg Applications of Engagement - Patient Centred Care - Patient and caregiver preferences and prioritized outcomes for cardiac surgery: A scoping review and consultation workshop Study aims: to identify patient and caregiver preferences and prioritized outcomes related to peri-operative care in cardiac surgery and its lifelong impact. What we did: We conducted a scoping review of five electronic databases. We included 43 studies that investigated patient or caregiver preferences and prioritized outcomes. Findings were summarized using descriptive statistics and a thematic analysis. Ten patients and seven caregivers were involved in a consultation workshop to validate or add to the findings. What we found: Based on the collective preferences of 3772 patients and caregivers from the review and 17 from the consultation workshop, a total of 108 patient preferences, 32 caregiver preferences, and 19 prioritized outcomes were identified. Patient and caregiver preferences overlap with the current recommended strategies to reduce risk and improve recovery among cardiac surgery patients. https://images.squarespace-cdn.com/content/v1/62103d1c31b3c41f4ef2f077/1709589769920-4N4O1Y7TNND9QCHXPOPR/image-asset.jpeg Applications of Engagement - Patient Centred Care - Patient Engagement in the Design of a Mobile Health App That Supports Enhanced Recovery Protocols for Cardiac Surgery: Development Study Study aims: to describe a process for, and the impact of, patient engagement in the development of a mobile Health app that supports patient and caregiver involvement with enhanced recovery protocols during the peri-operative period of cardiac surgery. What we did: Ten cardiac surgery patients and their caregivers formed an advisory panel. Themes were generated from discussions with the advisory panel to describe (1) the key messages they provided (2) how key messages were incorporated into the app, and (3) feedback from the app developers. What we found: The advisory panel generated seven key messages about app design and 16 key messages about app content. This information was directly incorporated into the app. The advisory panel provided unique recommendations that the app developers had not previously considered. Patient engagement may facilitate the development of a detail-oriented and patient-centered mobile health app whose design and content are driven by the lived experiences of end users. https://images.squarespace-cdn.com/content/v1/62103d1c31b3c41f4ef2f077/1709588177266-WWPIWK9N202LPJ3EQUKL/image-asset.jpeg Applications of Engagement - Patient Centred Care - Use of a mobile health application by adult non-congenital cardiac surgery patients: A feasibility study Study aims: To evaluate the feasibility (compliance, usability and user satisfaction) of a mobile health app for delivering Enhanced Recovery Protocols to cardiac surgery patients peri-operatively. What we did: Sixty-five cardiac surgery patients were given access to the app and completed system usability, satisfaction, and quality of life surveys before and after their cardiac surgery. What we found: Mobile health technology is feasible for peri-operative cardiac surgery patient education, including older adult patients. The majority of patients were satisfied with the app and would recommend using it over the use of printed materials. https://images.squarespace-cdn.com/content/v1/62103d1c31b3c41f4ef2f077/1709480435290-YJ1Y9UZJWJIZEIL5D6XB/image-asset.jpeg Applications of Engagement - Patient Centred Care - Barriers to Successful Discharge After Cardiac Surgery: A Focus Group Study and Cross-Sectional Survey Study aims: To investigate patient, caregiver, and health care provider perceptions of the discharge process after cardiac surgery. What we did: Sixteen patients and sixteen caregivers participated in four focus groups. The focus group discussions were used to develop surveys about values, barriers, and challenges relating to the discharge process. Seventy-eight patients, 34 caregivers, 53 nurses and/or other allied health professionals, and 8 surgeons completed the surveys. What we found: Four themes emerged from the focus groups (1) a lack of understanding about the discharge process and when it is appropriate, (2) issues relating to information provided to patients at discharge, (3) experiences with the health care system, and (4) the experiences of caregivers. According to the survey responses, the most important part of the discharge process for patients and caregivers was "knowing what to do in an emergency.” Patients and caregivers differed most from healthcare providers regarding their thoughts on informational barriers to discharge. Overall, patient and caregiver values should inform the post-cardiac surgery discharge to promote successful recovery. https://images.squarespace-cdn.com/content/v1/62103d1c31b3c41f4ef2f077/1709588925825-AJI7EUCGFVKUW18H8IEE/image-asset.jpeg Applications of Engagement - Patient Centred Care - Expanding enhanced recovery protocols for cardiac surgery to include the patient voice: A scoping review protocol Study aim: To describe a protocol for a scoping review of cardiac patient and caregiver preferences and outcomes relevant to cardiac surgery enhanced recovery protocols. What we did: We describe a protocol for a scoping review of existing literature describing patient and caregiver preferences and outcomes as they relate to care received in the peri-operative period of cardiac surgery. The search for relevant articles will be conducted using electronic databases and other online sources. Two patient partners with lived experience as cardiac surgery patients will be involved as collaborators. Expected contributions: This review will identify strategies that can be integrated into enhanced recovery protocols for cardiac surgery which align with patient- and caregiver-defined values. https://www.patientengagementinresearch.ca/other-work daily 0.75 2024-03-04 https://www.patientengagementinresearch.ca/other-work/social-prescribing monthly 0.5 2024-03-04 https://images.squarespace-cdn.com/content/v1/62103d1c31b3c41f4ef2f077/1709581977669-ZGMISJCTD7N0BDSTI9F1/image-asset.jpeg Other Work - Social Prescribing - Older adults and social prescribing experience, outcomes, and processes: a meta-aggregation systematic review Study aims: To synthesize available evidence from qualitative methods (e.g. interviews or focus groups) on experience, outcomes, and processes for social prescribing and among adults. What we did: We conducted a systematic review using the Joanna Brigg's approach. We searched multiple online databases for peer-reviewed studies which included adults aged 60 years and older, and examined social prescribing experience, outcomes, or processes. What we found: Eight studies met our criteria and were included in the review. We created five synthesized findings related to (1) the approach of social prescribing; implementation factors such as (2) relationships, (3) behaviour change strategies, and (4) the environment; and (5) older adults’ perceived health and psychosocial outcomes. We provide an overview of people and processes involved with social prescribing, identified research and practice gaps, and possible next steps for implementing and evaluating social prescribing for older adults in primary care. https://www.patientengagementinresearch.ca/other-work/mobility-and-built-environment monthly 0.5 2024-03-04 https://www.patientengagementinresearch.ca/about daily 0.75 2024-02-18 https://www.patientengagementinresearch.ca/home daily 1.0 2024-02-26 https://www.patientengagementinresearch.ca/annamchudyk daily 0.75 2024-02-18 https://images.squarespace-cdn.com/content/v1/62103d1c31b3c41f4ef2f077/2008a95b-7348-4c61-99e9-a8396434289c/Anna+Chudyk-9.jpg Anna M. Chudyk - About Me! I am an assistant professor in the College of Pharmacy, University of Manitoba. I am supported by a Patient-Oriented Research Awards - Transition to Leadership Stream award from the Canadian Institutes of Health Research, which supports emerging leaders in patient-oriented research. I apply participatory approaches to the design and conduct of research focused on patient and care partner-identified priorities and outcomes, and that engages patients, caregivers, and other end-users as active members of the research team. I also study the methods that underlie this work. I care deeply about the social aspects of clinical and health services research, but also have a background in biostatistics. Thus, I prefer to use mixed-methods approaches that are both grounded in people’s experiences and supported by hard data. I am always open to exploring collaborations and consulting opportunities that seek to integrate patient and care partner perspectives as drivers of the research, so don’t hesitate to contact me. — Anna M. Chudyk https://www.patientengagementinresearch.ca/contact daily 0.75 2022-03-08 https://www.patientengagementinresearch.ca/podcast daily 0.75 2024-02-22 https://images.squarespace-cdn.com/content/v1/62103d1c31b3c41f4ef2f077/93a97360-b881-4198-8e98-576371214a59/As+PER+Usual+Graphic.png