Program Report: Can-SOLVE CKD Network Presents an Inclusive Method for Developing Patient-Oriented Research Tools

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). Methods: The committee brings together a unique combination of Indigenous and non-Indigenous patient partners (including caregivers, family members, and living donors), researchers, as well as patient engagement and knowledge translation experts, combining a multitude of perspectives and expertise. Following an assessment of training needs within the network, the TMC undertook the co-development of 5 learning modules to address the identified gaps. Subsequently, the committee divided into working groups tasked with developing content using a consultive and iterative approach informed by the DoTTI framework for building web-based tools for patients. In addition, the TMC embodied the guiding principles of inclusiveness, support, mutual respect, and co-building as set out by the Patient Engagement Framework through the Strategy for Patient-Oriented Research (SPOR) of the Canadian Institutes of Health Research. Key findings: The 5 new modules include: A Patient Engagement Toolkit, Storytelling for Impact, Promoting Kidney Research in Canada (KidneyPRO), Wabishki Bizhiko Skaanj Learning Pathway, and Knowledge Translation. The TMC’s approach to developing these modules demonstrates how a diverse group of stakeholders working together can create tools to support high-quality POR. This also provides a roadmap for other health research entities interested in developing similar tools within their unique domains. Limitations: The landscape of patient engagement in research is constantly evolving. This underscores the need for sustained resources to keep POR tools and training relevant and up-to-date. Sustaining such resources may not be feasible for all research entities. Implications: Collaborative approaches integrating patients in the development of POR tools ensure the content is relevant and meaningful to patients. Broader adoption of such approaches has great potential to address existing gaps and enhance the Canadian POR landscape.

The dynamic nature of patient engagement within a Canadian patient‐oriented kidney health research network: Perspectives of researchers and patient partners

“…Patients and researchers explained how early identified gaps in support provided opportunities to develop internal resources that could enhance and sustain patient‐oriented research capacity. Patient partners described how resources that were under development at the time of interviews (e.g., communities of practice, Indigenous health research learning pathways) 29 were expected to promote research skills development and sustain culturally safe research practices. Building on the strong bonds formed among patient partners within the network, they discussed formalizing peer‐led training of patient partners in the how‐to of patient leadership.…”

“…These findings align with those of Greenhalgh et al, 15 who assert that a single, off‐the‐shelf framework may be less useful than a menu of evidence‐based resources. This opportunity to customize engagement approaches based on network members' needs led to the creation of several tools and products to support research processes targeted to patient and researcher audiences alike 28,29,32,33 . The Can‐SOLVE CKD Network is not unique in its application of guiding frameworks for patient engagement and commitment to key principles of inclusivity, support and mutual trust 34–37 .…”

“…This opportunity to customize engagement approaches based on network members' needs led to the creation of several tools and products to support research processes targeted to patient and researcher audiences alike. 28,29,32,33 The Can-SOLVE CKD Network is not unique in its application of guiding frameworks for patient engagement and commitment to key principles of inclusivity, support and mutual trust. [34][35][36][37] Whereas others have reported similar challenges to partner with patients in research, such as avoiding tokenism and balancing individual needs with research objectives, 17 our study is among the first to describe how research practices, supports and perspectives adapted to new and unforeseen issues arising over the course of a large-scale network partnership.…”

Partnering with patients and caregivers to enrich research and care in kidney disease: values and strategies

“…For individual research projects, it means involving patients and caregivers at a time when their perspectives can shape intervention design and study protocol rather than seeking feedback after all the major decisions have already been made [ 34 ]. Various tools for planning involvement strategies have been developed, such as the Multi Stakeholder Engagement Consortia (MuSE) planning matrix [ 12 ] and the Can-SOLVE Patient Engagement Roadmap [ 66 ].…”

Storytelling for impact: the creation of a storytelling program for patient partners in research

“…In a resulting network-wide training needs survey in the summer of 2017, ‘telling impactful stories’ was ranked second out of five identified priorities among network members. This prompted the Can-SOLVE CKD’s Training and Mentorship Committee (TMC) [ 7 ], a committee composed of patient partners, researchers, clinicians, and community members tasked with developing capacity-building tools, to explore the idea of creating a storytelling tool.…”