Project description:BackgroundIn the past decade, patient-oriented research (POR) has been at the forefront of healthcare research in Canada because it has the potential to make research more meaningful and relevant to patient needs. Despite this growing emphasis on and expectation to conduct POR, there is limited guidance about how to apply POR in practice. To address this capacity building need, the Knowledge Translation (KT) Program and patient partners co-designed, delivered, and evaluated Partners in Research (PiR), a 2-month online course for patients and researchers to collectively learn how to conduct and engage in POR.MethodsPiR was delivered to 4 cohorts of patients and researchers between 2017 and 2018. For each cohort, we evaluated the impact of the course on participants' knowledge, self-efficacy, intentions, and use of POR using surveys at 3 time points: baseline, post-course and 6-months post-course. We also monitored the process of course design and delivery by assessing implementation quality of the PiR course. Participants were asked to rate their satisfaction with course format, course materials, quality of delivery and their level of engagement via a 7-point Likert scale in the post-course survey.ResultsA total of 151 participants enrolled in the PiR course throughout the 4 cohorts. Of these, 49 patients and 33 researchers (n = 82 participants) consented to participate in the course evaluation. Process and outcome evaluations collected over a 9-month period indicated that participation in the PiR course increased knowledge of POR concepts for patients (p < .001) and for researchers (p < .001) from pre-course to post-course timepoints. Likewise, self-efficacy to engage in POR increased from baseline to post-course for both patients (p < .001) and researchers (p < .001). Moreover, participants reported high levels of satisfaction with content, delivery and interactive components of the course.ConclusionsThe PiR course increased capacity in POR for both researchers and patients. This work enhances our understanding of how to design useful and engaging education opportunities to increase patient and researcher capacity in POR.

Project description:Background:Patient-oriented research (POR) is a specific application of participatory research that promotes active patient engagement in health research. There is a growing concern that people involved in POR do not reflect the diversity of the population such research aims to serve, but are rather those more 'easily' engaged with institutions, organizations and society. Indigenous peoples are among such groups generally underrepresented in POR. The "Indigenous patient partners platform project" was a small-scale initiative aimed to address the issue of the underrepresentation of Indigenous people in patient-oriented research by recruiting, orienting and supporting Indigenous patient partners in Québec (Canada). This article reports on the findings of an evaluation conducted at the end of the project to garner lessons and identify strategies for engaging Indigenous patient partners in patient-oriented research. Methods:The evaluation of this initiative used a case study design hinging on documentary analysis and committee member interviews. Project documents (n =?29) included agendas and meeting minutes, support documents from the orientation workshop and workshop evaluations, and tools the committee developed as part of the project. Interview participants (n =?6) were patients and organizational partners. Thematic analysis was performed by two members of the research team. Patient partners actively contributed to validating the interpretation of result and knowledge translation. Results:Results point to four key components of Indigenous patient partner engagement in POR: initiation of partnership, interest development, capacity building and involvement in research. Specific lessons emphasize the importance of community connections in recruiting, sustaining and motivating patient partners, the need to be flexible in the engagement process, and the importance of consistently valuing patient partner contributions and involvement. Conclusions:There is a need to engage Indigenous patient partners in POR to ensure that healthcare practices, policies and research take their particular needs, stories and culture into account. While results of this evaluation are generally consistent with the existing literature on patient engagement, they offer additional insight into how to effectively engage Indigenous patient partners in research, which might also be relevant to the involvement of other marginalized populations who have been historically and systemically disempowered.

Project description:IntroductionCanadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) is a pan-Canadian health research network that engages patients as partners across 18 unique projects and core infrastructure. In this qualitative study, we explored how research teams integrated patient partners into network research activities to inform our patient engagement approach.MethodsTo capture a breadth of perspectives, this qualitative descriptive study purposively sampled researchers and patient partners across 18 network research teams. We conducted 4 focus groups (2 patients and 2 researchers; n = 26) and 28 individual telephone interviews (n = 12 patient partners; n = 16 researchers). Transcripts were coded in duplicate, and themes were developed through an inductive, thematic analysis approach.ResultsWe included 24 patient partners and 24 researchers from 17 of the 18 projects and all core committees within the network. Overarching concepts relate participants' initial impressions and uncertainty about patient engagement to an evolving appreciation of its value, impact and sustainability. We identified four themes with subthemes that characterized the dynamic nature of patient engagement and how participants integrated patients across network initiatives: (1) Reinforcing a shared purpose (learning together, collective commitment, evolving attitudes); (2) Fostering a culture of responsive and innovative research (accessible supports, strengthened process and product); (3) Aligning priorities, goals and needs (amenability to patient involvement, mutually productive relationships, harmonizing expectations); (4) Building a path to sustainability (value creation, capacity building, sustaining knowledge use).ConclusionsOur findings demonstrate the dynamic and adaptive processes related to patient engagement within a national, patient-oriented kidney health research network. Optimization of support structures and capacity are key factors to promote sustainability of engagement processes within and beyond the network.Patient or public contributionThis project was conceived in collaboration with a Can-SOLVE CKD patient partner (N. F.), with lived experience of kidney failure. He also co-designed the study's protocol, led focus groups and researcher interviews, and contributed to data analysis. L. G. has lived experience as a caregiver for a person with CKD and facilitated patient partner focus groups. The patient partners, both of whom are listed authors, provided important insights that shaped our interpretation and presentation of study findings.

Project description:Inadequate research capacity impedes the development of evidence-based health programming in sub-Saharan Africa. However, funding for research capacity building (RCB) is often insufficient and restricted, limiting institutions' ability to address current RCB needs. The Doris Duke Charitable Foundation's African Health Initiative (AHI) funded Population Health Implementation and Training (PHIT) partnership projects in five African countries (Ghana, Mozambique, Rwanda, Tanzania and Zambia) to implement health systems strengthening initiatives inclusive of RCB.Using Cooke's framework for RCB, RCB activity leaders from each country reported on RCB priorities, activities, program metrics, ongoing challenges and solutions. These were synthesized by the authorship team, identifying common challenges and lessons learned.For most countries, each of the RCB domains from Cooke's framework was a high priority. In about half of the countries, domain specific activities happened prior to PHIT. During PHIT, specific RCB activities varied across countries. However, all five countries used AHI funding to improve research administrative support and infrastructure, implement research trainings and support mentorship activities and research dissemination. While outcomes data were not systematically collected, countries reported holding 54 research trainings, forming 56 mentor-mentee relationships, training 201 individuals and awarding 22 PhD and Masters-level scholarships. Over the 5 years, 116 manuscripts were developed. Of the 59 manuscripts published in peer-reviewed journals, 29 had national first authors and 18 had national senior authors. Trainees participated in 99 conferences and projects held 37 forums with policy makers to facilitate research translation into policy.All five PHIT projects strongly reported an increase in RCB activities and commended the Doris Duke Charitable Foundation for prioritizing RCB, funding RCB at adequate levels and time frames and for allowing flexibility in funding so that each project could implement activities according to their trainees' needs. As a result, many common challenges for RCB, such as adequate resources and local and international institutional support, were not identified as major challenges for these projects. Overall recommendations are for funders to provide adequate and flexible funding for RCB activities and for institutions to offer a spectrum of RCB activities to enable continued growth, provide adequate mentorship for trainees and systematically monitor RCB activities.

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Building patient-oriented research capacity by co-designing a research handbook for patient partners

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