The state of patient engagement among pain research trainees in Canada: Results of a national web-based survey

Vader, Kyle; Tutelman, Perri R.; Linkiewich, Delane; Paré, Catherine; Wagenaar-Tison, Alice; Birnie, Kathryn A.; Chambers, Christine T.; Eubanks, Kathleen; Ghasemlou, Nader; Gunderson, Janet; Hudspith, Maria; Lane, Therese; Miller, Jordan; Richards, Dawn P.

doi:10.1080/24740527.2022.2115879

Cited by 3 publications

(3 citation statements)

References 21 publications

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“…Towards the end of the first phase of the Network, a group of patient partners came together to reflect on patient engagement and its outcomes through the first phase of the network and put their learnings into a publicly available video [ 28 ]. Further, a researcher approached the PE Committee to collaborate on a survey of trainees conducting pain research in Canada’s perspectives and experiences with patient engagement [ 29 ]. This survey further advanced knowledge related to engagement in the Canadian pain research community more broadly.…”

Section: Resultsmentioning

confidence: 99%

Evaluating the impacts of patient engagement on a national health research network: results of a case study of the Chronic Pain Network

Tripp,

Richards,

Daly-Cyr

et al. 2023

Res Involv Engagem

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Background The Chronic Pain Network (CPN) is a pan-Canadian research network focused on innovating and improving the quality and delivery of pain prevention, assessment, management and research for all Canadians. An important focus of the CPN is to work in collaboration with patient partners. Patient partners, researchers and clinicians work together in all aspects of the research network including on funded research projects and in the governance of the Network. Given this focus, the CPN identified the importance of evaluating their patient engagement work to understand its functioning and impact. Methods The objective of this exploratory evaluation case study was to understand the impacts of patient engagement on the CPN. The CPN worked with an external evaluation team which established an arms-length approach to the evaluation. Interviews were conducted with CPN members, including patient partners, leadership, funded researchers and committee co-chairs, at three discrete time points to trace the evolution of the patient engagement program within the Network. Key Network documents were also collected and reviewed. Data were analyzed following each set of interviews using content analysis guided by the principles of constant comparison and qualitative description. A final round of analysis was conducted using the Engage with Impact Toolkit, an impact measurement framework, to identify impacts of engagement. Results Impacts of patient engagement were identified at the individual, network, funded research project and research community levels. These impacts were observed in the following areas: (1) building community; (2) developing knowledge, skills and resources; (3) increasing confidence; (4) influencing priorities and decisions; (5) enabling additional opportunities; (6) promoting culture change; and, (7) coping with experiences of living with chronic pain. Conclusions While not without challenges, the patient engagement efforts of the CPN demonstrates the impact engaging patient partners can have on a national research network and related policy activities. Understanding the approaches to, and impacts of, patient engagement on health research networks can illuminate the value of having patient partners engaged in all aspects of a research network and should serve as encouragement to others who look to take on similar work.

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Section: Resultsmentioning

confidence: 99%

Evaluating the impacts of patient engagement on a national health research network: results of a case study of the Chronic Pain Network

Tripp,

Richards,

Daly-Cyr

et al. 2023

Res Involv Engagem

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“…As expanded upon in Additional file 1 : Table S4, these academic-researcher-focussed publications include a report on the proceedings of the 2017 Knowledge Translation Canada Summer Institute (whose focus was patient-oriented research (POR) and patient engagement in research) [ 19 ], a national online survey of pain research trainees [ 20 ] and a Delphi survey of a cohort of POR-award recipients within Quebec [ 21 ]. Collectively, these studies identified: considerations specific to the knowledge base that underlie patient engagement in research and the building and sustaining of relationships between academic researchers and patient partners [ 19 ]; recommendations to improve the implementation of patient engagement in research [ 20 ]; and key features of the anticipated future state of POR and early career researchers’ role in supporting POR’s development and implementation [ 21 ]. With the exception of systemic integration, all of the targetable areas identified in our current study are supported as future directions for patient engagement in research/POR by the aforementioned Canadian studies, although the specific features of these targetable areas varied between the studies.…”

Section: Discussionmentioning

confidence: 99%

Future directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers

Chudyk,

Stoddard,

Duhamel

et al. 2024

Health Res Policy Sys

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Background Patient engagement in research (also commonly referred to as patient or patient and public involvement in research) strives to transform health research wherein patients (including caregivers and the public) are regularly and actively engaged as multidisciplinary research team members (i.e. patient partners) working jointly towards improved health outcomes and an enhanced healthcare system. To support its mindful evolution into a staple of health research, this participatory study aimed to identify future directions for Canadian patient engagement in research and discusses its findings in the context of the international literature. Methods The study met its aim through a multi-meeting pan-Canadian virtual workshop. Participants (n = 30) included Strategy for Patient-Oriented Research-funded academic researchers and patient partners identified through a publicly available database, personal and professional networks and social media. All spoke English, could access the workshop virtually, and provided written informed consent. The workshop was composed of four, 1.5–3-h virtual meetings wherein participants discussed the current and preferred future states of Canadian patient engagement in research. Workshop discussions (i.e. data) were video and audio recorded. Themes were generated through an iterative process of inductive thematic analysis that occurred concurrently with the multi-week workshop. Results Our participatory and iterative process identified 10 targetable areas of focus for the future of Canadian patient engagement in research. Five were categorized as system-level (systemic integration; academic culture; engagement networks; funding models; compensation models), one as researcher-level (engagement processes), and four crossed both levels (awareness; diversity and recruitment; training, tools and education; evaluation and impact). System level targetable areas called for reshaping the patient engagement ecosystem to create a legitimized and supportive space for patient engagement to be a staple component of a learning health system. Researcher level targetable areas called for academic researchers and patient partners to collaboratively generate evidence and apply knowledge to inform values and behaviours necessary to foster and sustain supportive health research spaces that are accessible to all. Conclusions Future directions for Canadian patient engagement in research span 10 interconnected targetable areas that require strong leadership and joint action between patient partners, academic researchers, and health and research institutions if patient engagement is to become a ubiquitous component of a learning health system.

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“…Although we are still patients and caregivers, we may no longer see ourselves solely as patient partners in research as we are often leading patient engagement initiatives ourselves, 29 and helping others and organisations to engage patients in the everyday work they do. 3 4 30 This advisor-role may even be seen as a fifth stage—we are seeing more patients move beyond research partners to using their lived experience and education to make a career out of patient engagement. 27 …”

Section: Discussionmentioning

confidence: 99%

Matching researchers’ needs and patients’ contributions: practical tips for meaningful patient engagement from the field of rheumatology

Schoemaker

Richards

Wit³

2023

Ann Rheum Dis

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There is an increasing recognition of the importance of patient engagement and involvement in health research, specifically within the field of rheumatology. In general, researchers in this specialty appreciate the value of patients as partners in research. In practice, however, the majority of researchers does not involve patients on their research teams. Many researchers find it difficult to match their needs for patient engagement and the potential contributions from individuals living with rheumatic disease. In this Viewpoint, we provide researchers and patients practical tips for matching ‘supply and demand,’ based on our own experiences as patient engagement consultants and trainers in rheumatology research. All authors started as a ‘naïve’ patient or caregiver, an identity that evolved through a process of ‘adversarial growth’: positive changes that are experienced as a result of the struggle with highly challenging life circumstances. Here, we introduce four stages of adversarial growth in the context of research. We submit that all types of patients have their own experiences, qualities and skills, and can add specific input to research. The recommendations for engagement are not strict directives. They are meant as starting points for discussion or interview. Regardless of individual qualities and knowledge, we believe that all patients engaged in research have a single goal in common: to contribute to research that ultimately will change the lives of many other patients.

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The state of patient engagement among pain research trainees in Canada: Results of a national web-based survey

Cited by 3 publications

References 21 publications

Evaluating the impacts of patient engagement on a national health research network: results of a case study of the Chronic Pain Network

Evaluating the impacts of patient engagement on a national health research network: results of a case study of the Chronic Pain Network

Future directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers

Matching researchers’ needs and patients’ contributions: practical tips for meaningful patient engagement from the field of rheumatology

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