| Literature DB >> 35173970 |
Leah E Getchell1, Elisabeth Fowler2, Marian Reich1, Selina Allu1,3, Chantal Boucher2, Kevin Burns1,4, Arlene Desjarlais1, Audrey L'Esperance1,5, Meghan Elliott1,3, Helen Robinson-Settee1, Helen Hoi-Lun Chiu1,6, Norman D Rosenblum1,7, Craig Settee1, Alicia Murdoch1, Simone Dew1, Amanda Green1, Linnea Franson1, Eva Bernstein1, Dwight Sparkes1, Catherine Turner1, Nicolas Fernandez1,8, Ruth Sapir-Pichhadze1,9,10.
Abstract
PURPOSE OF PROGRAM: Given the growing interest in patient-oriented research (POR) initiatives, there is a need to provide relevant training and education on how to engage with patients as partners on research teams. SOURCES OF INFORMATION: As part of its mandate to develop appropriate training materials, the patient-oriented renal research network, Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD), established a training and Mentorship Committee (TMC).Entities:
Keywords: chronic kidney disease; indigenous cultural safety; knowledge translation; patient engagement; patient-oriented research; storytelling; training
Year: 2022 PMID: 35173970 PMCID: PMC8842461 DOI: 10.1177/20543581221074566
Source DB: PubMed Journal: Can J Kidney Health Dis ISSN: 2054-3581
Figure 1.Can-SOLVE CKD Learning Tree.
Note. The 5 patient-oriented research learning modules are analogous to tree branches. Rooted across all modules are the values of; Respect—honoring the feelings, rights, perspectives, and traditions of network members; Relevance—ensuring responsiveness to the priorities and learning needs of various members of the network; Reciprocity—promoting exchange of ideas, experiences, and knowledge and recognizing the importance of relationships when engaging in patient-oriented research; Responsibility—being accountable to the vision and mission of the network and promoting the values of patient engagement in all network activities and; Reflection—thoughtfully evaluating the learning needs of network members and soliciting ongoing feedback from stakeholders to ensure relevance of the educational materials and resources offered. Can-SOLVE CKD = Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease.
Opportunities for Partnering With Patients in Research.
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Note. This chart outlines the ways Can-SOLVE CKD patient partners use transferrable skills to contribute at various research stages.
Additional information may be found in reference.
Figure 2.Storytelling for Impact. Can-SOLVE CKD patient partner, Cathy Woods, used a portion of her written story developed through the Storytelling For Impact module as part of her introduction as co-master of ceremonies at the 2018 SPOR Summit.
Figure 3.The knowledge-to-action framework.
Note. This image illustrates how the Knowledge-to-Action framework has been used by the Can-SOLVE CKD project “Strategies to enhance patient self-management of CKD.” (Also see Strategies to enhance patient self-management of Chronic Kidney Disease—Can-SOLVE CKD Network [cansolveckd.ca]). Can-SOLVE CKD = Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease.
The Can-SOLVE CKD Learning Branches.
| Learning branch | Aims/goals | Main learners | Tools/products | Reference |
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| Patient engagement toolkit | To create resources for patients and researchers engaged in patient-oriented research | All stakeholders in kidney research, including patients and researchers. | Patient Engagement Roadmap; skills and contributions chart; tips for collaboration in patient engagement; a toolkit for project leads; a glossary of terms; practical tools for teams for internal functioning as well as on roles of team members in the research process. |
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| Storytelling for impact | To empower and equip patient partners to tell their healthcare stories for impact. | All stakeholders in kidney research, including patients and researchers. | A peer-led online course (zoom calls and independent work) resulting in an adaptable personal story. |
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| KidneyPRO | To enhance patient knowledge on Canadian kidney research and enhance patient and researcher knowledge on patient participation and partnership in research. | All stakeholders in kidney research, including patients and researchers. | Self-paced online learning module providing foundational aspects of kidney research in Canada; supporting patients in meaningful engagement as partners and participants in research; and increasing awareness for kidney research opportunities. |
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| Wabishki Bizhiko Skaanj | To enhance researchers’ and network members’ knowledge and awareness of racial biases, indigenous voices and stories, the impact of colonization on Indigenous health, and promote cultural safety. | All stakeholders in kidney research, including patients and researchers. | A learning pathway guiding researchers and patient partners through interactive exercises, online training modules, webinars and online/print resources encouraging participants to look, listen, learn, and lead. Learners gain a better understanding of Indigenous experiences and perspectives in health, research and education. |
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| Knowledge translation | To improve knowledge translation (KT) literacy and capacity for KT within the context of patient-oriented research and kidney health research. | All stakeholders in kidney research, including patients and researchers. | Online, self-paced, e-learning modules are being developed on Articulate Storyline 360 ( |
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Figure 4.Network-wide culture shift.
Note. Each of the learning branches is driving cultural shifts within the Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) Network.