Collaborative implementation science: a Can-SOLVE CKD case example.

ABSTRACT: Research is critical for uncovering new and effective therapies for better health outcomes, yet there remains a significant lag between identifying evidence-based interventions and implementing them into practice. Research teams can often be experienced in evidence generation, but less so in evidence implementation, underscoring the need for more customized tools to support them in this latter step. The implementation stage can be especially challenging given how strategies must be tailored to the unique end users and contexts of a given intervention. Therefore, our patient-oriented kidney research network sought to create an "Implementation Toolkit" and "Pathway to Implementation" guide to help research teams and their operational and clinical partners in implementing their interventions. Importantly, the tools were created using input and feedback from diverse groups, including patient partners, implementation science experts, researchers, operational leaders, and policymakers, all of whom play role in supporting the implementation of health interventions. Our tools are widely applicable to diverse teams, regardless of the intervention or innovation being implemented. SPANISH ABSTRACT: http://links.lww.com/IJEBH/A214.

Access to and Health Outcomes of Pediatric Solid Organ Transplantation for Indigenous Children in 4 Settler-colonial Countries: A Scoping Review.

Solid organ transplantation (SOT) is considered the optimal treatment for children with end-stage organ failure; however, increased efforts are needed to understand the gap surrounding equitable access to and health outcomes of SOT for Indigenous children. This scoping review summarizes the literature on the characteristics of access to and health outcomes of pediatric SOT among Indigenous children in the settler-colonial states of Canada, Aotearoa New Zealand, Australia, and the United States. A search was performed on MEDLINE, EMBASE, PsycINFO, and CINAHL for studies matching preestablished eligibility criteria from inception to November 2021. A preliminary gray literature search was also conducted. Twenty-four studies published between 1996 and 2021 were included. Studies addressed Indigenous pediatric populations within the United States (n = 7), Canada (n = 6), Aotearoa New Zealand (n = 5), Australia (n = 5), and Aotearoa New Zealand and Australia combined (n = 1). Findings showed that Indigenous children experienced longer time on dialysis, lower rates of preemptive and living donor kidney transplantation, and disparities in patient and graft outcomes after kidney transplantation. There were mixed findings about access to liver transplantation for Indigenous children and comparable findings for graft and patient outcomes after liver transplantation. Social determinants of health, such as geographic remoteness, lack of living donors, and traditional spiritual beliefs, may affect SOT access and outcomes for Indigenous children. Evidence gaps emphasize the need for action-based initiatives within SOT that prioritize research with and for Indigenous pediatric populations. Future research should include community-engaged methodologies, situated within local community contexts, to inform culturally safe care for Indigenous children.

Perceptions and Information-Seeking Behavior Regarding COVID-19 Vaccination Among Patients With Chronic Kidney Disease in 2023: A Cross-Sectional Survey.

Background: People living with chronic kidney disease (CKD) face an increased risk of severe outcomes such as hospitalization or death from COVID-19. COVID-19 vaccination is a vital approach to mitigate the risk and severity of infection in patients with CKD. Limited information exists regarding the factors that shape COVID-19 vaccine uptake, including health information-seeking behavior and perceptions, within the CKD population. Objective: The objectives were to describe among CKD patients, (1) health information-seeking behavior on COVID-19, (2) their capacity to comprehend and trust COVID-19 information from different sources, and (3) their perceptions concerning COVID-19 infection and vaccination. Design/Setting: Cross-sectional web-based survey administered in British Columbia and Ontario from February 17, 2023, to April 17, 2023. Participants: Chronic kidney disease G3b-5D patients and kidney transplant recipients (CKD G1T-5T) enrolled in a longitudinal COVID-19 vaccine serology study. Methods and Measurements: The survey consisted of a questionnaire that included demographic and clinical data, perceived susceptibility of contracting COVID-19, the ability to collect, understand, and trust information on COVID-19, as well as perceptions regarding COVID-19 vaccination. Descriptive statistics were used to present the data with values expressed as count (%) and chi square tests were performed with a significance level set at P ≤ .05. A content analysis was performed on one open-ended response regarding respondents' questions surrounding COVID-19 infection and vaccination. Results: Among the 902 patients who received the survey via email, 201 completed the survey, resulting in a response rate of 22%. The median age was 64 years old (IQR 53-74), 48% were male, 51% were university educated, 32% were on kidney replacement therapies, and 57% had received ≥5 COVID-19 vaccine doses. 65% of respondents reported that they had sought out COVID-19-related information in the last 12 months, with 91% and 84% expressing having understood and trusted the information they received, respectively. Those with a higher number of COVID-19 vaccine doses were associated with having sought out (P =.017), comprehended (P < .001), and trusted (P =. 005) COVID-19-related information. Female sex was associated with expressing more concern about contracting COVID-19 (P = .011). Most respondents strongly agreed to statements regarding the benefits of COVID-19 vaccination. Respondents' questions about COVID-19 infection and vaccination centered on 4 major themes: COVID-19 vaccination strategy, vaccine effectiveness, vaccine safety, and the impact of COVID-19 infection and vaccination on kidney health. Limitations: This survey was administered within the Canadian health care context to patients with CKD who had at least 1 COVID-19 vaccine dose. Race/ethnicity of participants was not captured. Conclusions: In this survey of individuals with CKD, COVID-19 information-seeking behavior was high and almost all respondents understood and trusted the information they received. Perceptions toward the COVID-19 vaccine and booster were mostly favorable.

The Ottawa Statement implementation guidance document for cluster randomized trials in the hemodialysis setting.

Research teams are increasingly interested in using cluster randomized trial (CRT) designs to generate practice-guiding evidence for in-center maintenance hemodialysis. However, CRTs raise complex ethical issues. The Ottawa Statement on the Ethical Design and Conduct of Cluster Randomized Trials, published in 2012, provides 15 recommendations to address ethical issues arising within 7 domains: justifying the CRT design, research ethics committee review, identifying research participants, obtaining informed consent, gatekeepers, assessing benefits and harms, and protecting vulnerable participants. But applying the Ottawa Statement recommendations to CRTs in the hemodialysis setting is complicated by the unique features of the setting and population. Here, with the help of content experts and patient partners, we co-developed this implementation guidance document to provide research teams, research ethics committees, and other stakeholders with detailed guidance on how to apply the Ottawa Statement recommendations to CRTs in the hemodialysis setting, the result of a 4-year research project. Thus, our work demonstrates how the voices of patients, caregivers, and all stakeholders may be included in the development of research ethics guidance.

Effect of a Novel Multicomponent Intervention to Improve Patient Access to Kidney Transplant and Living Kidney Donation: The EnAKT LKD Cluster Randomized Clinical Trial.

Importance: Patients with advanced chronic kidney disease (CKD) have the best chance for a longer and healthier life if they receive a kidney transplant. However, many barriers prevent patients from receiving a transplant. Objectives: To evaluate the effect of a multicomponent intervention designed to target several barriers that prevent eligible patients from completing key steps toward receiving a kidney transplant. Design, Setting, and Participants: This pragmatic, 2-arm, parallel-group, open-label, registry-based, superiority, cluster randomized clinical trial included all 26 CKD programs in Ontario, Canada, from November 1, 2017, to December 31, 2021. These programs provide care for patients with advanced CKD (patients approaching the need for dialysis or receiving maintenance dialysis). Interventions: Using stratified, covariate-constrained randomization, allocation of the CKD programs at a 1:1 ratio was used to compare the multicomponent intervention vs usual care for 4.2 years. The intervention had 4 main components, (1) administrative support to establish local quality improvement teams; (2) transplant educational resources; (3) an initiative for transplant recipients and living donors to share stories and experiences; and (4) program-level performance reports and oversight by administrative leaders. Main Outcomes and Measures: The primary outcome was the rate of steps completed toward receiving a kidney transplant. Each patient could complete up to 4 steps: step 1, referred to a transplant center for evaluation; step 2, had a potential living donor contact a transplant center for evaluation; step 3, added to the deceased donor waitlist; and step 4, received a transplant from a living or deceased donor. Results: The 26 CKD programs (13 intervention, 13 usual care) during the trial period included 20 375 potentially transplant-eligible patients with advanced CKD (intervention group [n = 9780 patients], usual-care group [n = 10 595 patients]). Despite evidence of intervention uptake, the step completion rate did not significantly differ between the intervention vs usual-care groups: 5334 vs 5638 steps; 24.8 vs 24.1 steps per 100 patient-years; adjusted hazard ratio, 1.00 (95% CI, 0.87-1.15). Conclusions and Relevance: This novel multicomponent intervention did not significantly increase the rate of completed steps toward receiving a kidney transplant. Improving access to transplantation remains a global priority that requires substantial effort. Trial Registration: ClinicalTrials.gov Identifier: NCT03329521.

Ensuring Indigenous co-leadership in health research: a Can-SOLVE CKD case example.

BACKGROUND: Indigenous people are insightful and informed about their own health and wellness, yet their visions, strengths and knowledge are rarely incorporated into health research. This can lead to subpar engagement or irrelevant research practices, which exacerbates the existing health inequities Indigenous people experience compared to the non-Indigenous population. Data consistently underscores the importance of Indigenous self-determination in research as a means to address health inequities. However, there are few formal methods to support this goal within the existing research context, which is dominated by Western perspectives. MAIN TEXT: Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) is a patient-oriented research network in Canada that recognizes the need to create the space to facilitate Indigenous self-determination in research. Indigenous members of the network therefore created and evolved a unique group, called the Indigenous Peoples' Engagement and Research Council (IPERC). IPERC plays a critical role in informing Can-SOLVE CKD research priorities, as well as creating tools to support Indigenous-specific research and engagement. This approach ensures that Indigenous voices and knowledge are critical threads within the fabric of the network's operations and research projects. Here, we describe the methods taken to create a council such as IPERC, and provide examples of initiatives by the council that aim to increase Indigenous representation, participation and partnership in research. We share lessons learned on what factors contribute to the success of IPERC, which could be valuable for other organizations interested in creating Indigenous-led research councils. CONCLUSION: Indigenous self-determination in research is critical for addressing health inequities. Here, we present a unique model, led by a council of diverse Indigenous people, which could help reduce health equities and lead to a better era of research for everyone.

Knowledge Translation in Glomerulonephritis: Successes in Translational Research From the Bench to Bedside.

Purpose of review: Glomerulonephritis refers to a rare group of diseases characterized by glomerular inflammation, which collectively are a common cause of kidney failure. Until recently, there was a lack of high-quality clinical trials to inform the care of patients with glomerulonephritides. We identified examples of successful translational research spanning from basic science to clinical applications, and highlight gaps in implementation science. Sources of information: The focus of our review was derived from discussions between health care professionals, researchers, and patient partners. We also performed literature searches pertaining to the treatment of glomerulonephritis in PubMed and Google Scholar. Methods: Examples of successful knowledge translation were generated through review of new evidence in the past 5 years and by iterative discussions by the authors. We then conducted a narrative review of several themes related to knowledge translation in glomerulonephritis. This was complemented by an interview with a patient partner to provide an example of a patient's perspective living with glomerulonephritis. Key findings: We summarized selected recent advances in glomerulonephritis and its knowledge translation in the following domains: (1) identification of auto-antibodies in membranous nephropathy and minimal change disease; (2) clinical trials of novel targeted therapies for IgA nephropathy and lupus nephritis, which have led to approval of new treatments; (3) developments in research networks and clinical trials in glomerulonephritis; (4) recognition of the importance in developing standardized patient reported outcome measures in clinical trials; and (5) barriers in knowledge translation including access to medication. Limitations: A systematic search of the literature and formal assessment of quality of evidence were beyond the scope of this review.

Motif de la revue: La glomérulonéphrite désigne un groupe rare de maladies qui se caractérisent par une inflammation des glomérules. Collectivement, ces maladies sont une cause fréquente d'insuffisance rénale. Jusqu'à récemment, il n'y avait pas d'essais cliniques de grande qualité pour guider les soins des patients atteints de glomérulonéphrites. Nous avons répertorié des exemples de recherches translationnelles réussies, allant de la recherche fondamentale aux applications cliniques, et nous avons mis en évidence les lacunes dans l'application de la science. Sources: L'essentiel de notre examen est dérivé de discussions entre les professionnels de la santé, les chercheurs et les patients partenaires. Nous avons également procédé à une revue de la littérature sur PubMed et Google Scholar portant sur le traitement de la glomérulonéphrite. Méthodologie: Des exemples d'application réussie des connaissances ont été générés par un examen des récentes données probantes (cinq dernières années) et par des discussions itératives entre les auteurs. Nous avons ensuite procédé à une revue narrative de plusieurs thèmes liés à l'application des connaissances en contexte de glomérulonéphrite. Cette démarche a été complétée par une entrevue avec une patiente partenaire, afin de fournir le point de vue d'une personne vivant avec une glomérulonéphrite. Principaux résultats: Nous avons résumé certaines des avancées récentes de la recherche sur la glomérulonéphrite et l'application des connaissances dans les domaines suivants: 1) l'identification d'auto-anticorps dans la glomérulonéphrite membraneuse et la néphropathie à lésion glomérulaire minime; 2) les essais cliniques portant sur de nouvelles thérapies ciblées pour la néphropathie à IgA et la néphrite lupique qui ont conduit à l'approbation de nouveaux traitements; 3) les développements dans les réseaux de recherche et les essais cliniques sur la glomérulonéphrite; 4) la reconnaissance de l'importance d'élaborer des mesures normalisées pour les résultats rapportés par les patients dans les essais cliniques; 5) les obstacles à l'application des connaissances, y compris l'accès aux médicaments. Limites: Une recherche systématique de la documentation et l'évaluation officielle de la qualité des preuves dépassaient la portée de cet examen.

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

Storytelling is a powerful means to evoke empathy and understanding among people. When patient partners, which include patients, family members, caregivers and organ donors, share their stories with health professionals, this can prompt listeners to reflect on their practice and consider new ways of driving change in the healthcare system. However, a growing number of patient partners are asked to 'share their story' within health care and research settings without adequate support to do so. This may ultimately widen, rather than close, the gap between healthcare practitioners and people affected by chronic disease in this new era of patient and public involvement in research. To better support patient partners with storytelling in the context of a patient-oriented research network, Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) Network adapted an existing in-person storytelling workshop for patient educators within a hospital setting. The result is a 6-week virtual program called Storytelling for Impact, which guides patients, family members, caregivers and organ donors in developing impactful stories and sharing them at health care and research events, e.g., conferences. The online series of synchronous workshops is co-facilitated by story coaches, who are program alumni and Can-SOLVE CKD staff with trained storytelling experience. Each story follows a structure that includes a call to action, which aims to positively impact the priority-setting and delivery of care and research in Canada. The program has been a transformational process for many who have completed it, and numerous other health organizations have expressed interest in sharing this tool with their own patient partners. As result, we have also created an asynchronous online program that can be used by other interested parties outside our network. Patient partners who share their stories can be powerful mediators for inspiring changes in the health care and research landscape, with adequate structured support. We describe two novel programs to support patient partners in impactful storytelling, which are applicable across all health research disciplines. Additional resources are required for sustainability and scale up of training, by having alumni train future storytellers.

Storytelling is a powerful means to evoke empathy and understanding among people. When patient partners share their stories with health professionals, this can prompt listeners to reflect on their practice and consider new ways of improving the healthcare system. However, as a growing number of patient partners are asked to 'share their story' within health care and research settings, there is often not enough tools and resources to support them in preparing their stories in a way that will be impactful for the audience members. Our kidney research network sought to create a novel in-person storytelling program to address this gap within our health research context. The result is a 6-week program called Storytelling for Impact, which guides patient partners­which includes patients, family members, caregivers and organ donors­in developing impactful stories and sharing them in a formal setting. The program is led by story coaches, who are patient partners and staff with trained storytelling experience. Participants are encouraged to include a call to action in their story, which aims to outline clear ways in which health professionals can facilitate positive change in health research or care. Many participants have described the program as transformational, and numerous other health organizations have expressed interest in sharing this tool with their own patient partners. As a result, we have also created a second online program that can be used by other interested parties outside our network. This paper highlights the adaptation process, content, participant feedback and next steps for the program.

Wabishki Bizhiko Skaanj: a learning pathway to foster better Indigenous cultural competence in Canadian health research.

OBJECTIVE: In Canada, Indigenous people experience racism across diverse settings, including within the health sector. This has negatively impacted both the quality of care that Indigenous people receive as well as how research related to Indigenous populations is conducted. Therefore, an Indigenous-led council at a kidney research network, in partnership with other key stakeholders, sought to create a learning pathway that aims to distill the racism that Indigenous people face, and build cultural competence, within the health sector. PARTICIPANTS: The learning pathway was designed for researchers, health care providers, patient partners and administrators. SETTING: Various components of the pathway are established trainings in healthcare and research settings at provincial and national levels. Provincially, some components are implemented in British Columbia, Alberta, Saskatchewan, Manitoba and Ontario. INTERVENTION: The pathway, called Wabishki Bizhiko Skaanj (meaning "White Horse" in Anishinaabemowin), involves six key steps: a culturally tailored blanket exercise that walks participants through the history of local Indigenous Nations/peoples; a more detailed online training program (San'yas); a series of webinars on Indigenous research ethics and protocols; an educational booklet about engaging Knowledge Keepers in research, as well as sharing details about their traditional knowledge and culture; two certification programs about Indigenous ownership of data; and a "book club," wherein the conversation of racism-and the goal for finding solutions-is continually discussed. OUTCOMES: Wabishki Bizhiko Skaanj is working to build cultural competence in the Canadian health sector. IMPLICATIONS: This learning pathway has the potential to address racial disparities across the country and improve health outcomes for Indigenous peoples.

RéSUMé: OBJECTIF: Au Canada, les autochtones font face au racisme dans divers milieux, y compris dans le secteur de la santé. Cela a eu une incidence négative sur la qualité des soins que reçoivent les peuples autochtones, ainsi que sur la façon dont la recherche sur les populations autochtones est menée. Par conséquent, un conseil dirigé par des Autochtones dans un réseau de recherche sur les reins, en partenariat avec d'autres parties prenantes, a cherché à créer une voie d'apprentissage visant à réduire le racisme auquel les peuples autochtones sont confrontés et à renforcer les compétences culturelles au sein du secteur de la santé. PARTICIPANTS: La voie d'apprentissage a été conçue pour les chercheurs, les fournisseurs de soins de santé, les patients partenaires et les administrateurs. CADRE: Cette voie d'apprentissage est composée de formations établies dans le milieu de la santé et de la recherche au niveau provincial et national. À l'échelle provinciale, il y a des programmes ayant lieu en Colombie-Britannique, en Alberta, en Ontario, en Saskatchewan et au Manitoba. INTERVENTION: La voie d'apprentissage, appelée Wabishki Bizhiko Skaanj (qui signifie « cheval blanc ¼ en Anishinaabemowin), comporte six étapes clés : un exercice culturel sur mesure qui guide les participants à travers l'histoire des nations/peuples autochtones locaux à l'aide de diverses couvertures culturelles; un programme de formation en ligne détaillé (San'yas); une série de webinaires sur l'éthique et les protocoles autochtones en matière de recherche; un livret pédagogique sur l'engagement des gardiens de la connaissance en recherche ainsi que le partage d'informations sur leur connaissance et leur culture traditionnelle; deux programmes de certification sur la propriété autochtone des données; et un « club de lecture ¼ dans lequel nous ne cessons de discuter du racisme tout en cherchant des solutions. RéSULTATS: Wabishki Bizhiko Skaanj s'efforce de renforcer les compétences culturelles dans le secteur de la santé au Canada. IMPLICATIONS: Cette voie d'apprentissage a le potentiel de s'attaquer aux disparités raciales à l'échelle nationale et d'améliorer les résultats en matière de santé pour les peuples autochtones.

Defining the Scope of Knowledge Translation Within a National, Patient-Oriented Kidney Research Network.

PURPOSE OF PROGRAM: Integrated knowledge translation (IKT) is a collaborative approach whereby knowledge created through health research is utilized in ways that are relevant to the needs of all stakeholders. However, research teams have limited capacity and know-how for achieving IKT, resulting in a disconnect between the generation and application of knowledge. The goal of this report is to describe how IKT research was achieved across a large-scale, patient-oriented research network, Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD). SOURCES OF INFORMATION: Resources to facilitate knowledge translation (KT) planning across the network were developed by the Can-SOLVE CKD Knowledge User/Knowledge Translation Committee with reference to established Canadian KT and patient engagement tools and frameworks, review of the published and gray literature, and expertise of committee members. METHODS: The Can-SOLVE CKD Knowledge User/Knowledge Translation Committee consisting of patient partners, health care providers, policymakers, and researchers provided oversight of the development and implementation of the network's IKT initiatives. Guided by its strategic framework, the committee developed KT planning templates and review checklists to assist network projects with preparing for dissemination, implementation, and scale and spread of their interventions. The committee has acted in a consultative capacity to facilitate IKT across network initiatives and has supported capacity building through KT activities aimed at network membership and knowledge users more broadly. KEY FINDINGS: The Can-SOLVE CKD Knowledge User/Knowledge Translation Committee established a nation-wide strategy for KT infrastructure and capacity building. Acting as a knowledge intermediary, the committee has connected research teams with knowledge users across Canada to support practices and policies informed by evidence generated by the network. The committee has developed KT initiatives, including a Community of Practice, whereby participants across different regions and disciplines convene regularly to share health research knowledge and communications strategies relevant to the network. Critically, patients are engaged and contribute throughout the research process. Examples of IKT activities from select projects are provided, as well as ways for sustaining the network's KT platform. LIMITATIONS: The KT resources developed by the committee were adapted from other established resources to meet the needs of the network and have not undergone formal evaluation in this context. Given the broad scope of the network, resources to facilitate implementation and knowledge user engagement may not meet the needs of all initiatives and must be tailored accordingly. Knowledge barriers, including a lack of information and skills related to conceptual and practical aspects of KT, among network members provided a rationale for various KT capacity-building initiatives. IMPLICATIONS: The approach described here offers a practical method for achieving IKT, including how to plan, implement, and sustain initiatives across large-scale health research networks. Within the context of Can-SOLVE CKD, these efforts will shorten knowledge-practice gaps through producing and applying relevant research to improve the lives of people living with kidney disease.

OBJECTIF DU PROGRAMME: L'application intégrée des connaissances (AIC) est une approche collaborative à répondre aux besoins de tous les intervenants. Les équipes de recherche ont cependant une capacité et un savoir-faire limités pour réaliser l'AIC, ce qui entraîne un décalage entre la production et l'application des connaissances. L'objectif de cet article est de décrire comment la recherche sur l'AIC a été réalisée dans le cadre d'un vaste réseau de recherche axée sur le patient, le réseau CAN-SOLVE CKD (Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease). SOURCES: Les ressources visant à faciliter la planification de l'application des connaissances (AC) dans l'ensemble du réseau ont été élaborées par le Comité des utilisateurs/de l'application des connaissances (Knowledge User/Knowledge Translation Committee) de Can-SOLVE CKD en se référant à des outils et des cadres d'AC et de participation des patients établis au Canada, à l'examen de la documentation publiée et de la littérature grise et à l'expertise des membres du comité. MÉTHODOLOGIE: Le Comité des utilisateurs/de l'application des connaissances de CAN-SOLVE, constitué de partenaires patients, de fournisseurs de soins, de décideurs et de chercheurs, a supervisé le développement et la mise en œuvre des initiatives d'AIC du réseau. Guidé par son cadre stratégique, le comité a élaboré des modèles de planification pour l'AC et des listes de vérification pour aider les projets du réseau à se préparer à la diffusion et à la mise en œuvre de leurs interventions, de même qu'à leur élargissement et leur diffusion. Le comité a agi à titre consultatif pour faciliter l'AIC dans l'ensemble des initiatives du réseau, et a appuyé le renforcement des capacités par le biais d'activités d'AC destinées aux membres du réseau et, plus largement, aux utilisateurs des connaissances. PRINCIPAUX RÉSULTATS: Le Comité des utilisateurs/de l'application des connaissances de CAN-SOLVE a établi une stratégie nationale pour l'infrastructure et le renforcement des capacités en matière d'AC. En tant qu'intermédiaire, le comité a mis en relation des équipes de recherche et des utilisateurs des connaissances partout au Canada afin d'appuyer les pratiques et les politiques fondées sur les données probantes produites par le réseau. Le comité a élaboré des initiatives d'AC, notamment une communauté de pratique où les participants des différentes régions et disciplines se réunissent sur une base régulière pour partager les connaissances générées en recherche et les stratégies de communication pertinentes pour le réseau. Il est essentiel que les patients s'engagent et contribuent tout au long du processus de recherche. Des exemples d'activités d'AIC tirés de projets sélectionnés sont fournis, de même que des moyens de maintenir la plateforme d'AC du réseau. LIMITES: Les ressources d'AC développées par le comité ont été adaptées à partir de ressources établies pour répondre aux besoins du réseau et, dans ce contexte, n'ont pas fait l'objet d'une évaluation officielle. Compte tenu de la vaste portée du réseau, les ressources destinées à faciliter la mise en œuvre et la participation des utilisateurs des connaissances pourraient ne pas répondre aux besoins de toutes les initiatives et devraient être adaptées en conséquence. Les freins à la connaissance parmi les membres du réseau, notamment le manque d'information et de compétences liées aux aspects conceptuels et pratiques de l'AC, ont servi de justification à diverses initiatives de renforcement des capacités en matière d'AC. CONCLUSION: L'approche décrite offre une méthode pratique pour parvenir à l'AIC, notamment dans la façon de planifier, de mettre en œuvre et d'appuyer des initiatives dans les réseaux de recherche d'envergure. Dans le contexte de CAN-SOLVE CKD, ces efforts permettront de réduire les écarts entre les connaissances et les pratiques, en produisant et en appliquant des recherches visant l'amélioration de la vie des personnes atteintes de néphropathies.

International consensus definitions of clinical trial outcomes for kidney failure: 2020.

Kidney failure is an important outcome for patients, clinicians, researchers, healthcare systems, payers, and regulators. However, no harmonized international consensus definitions of kidney failure and key surrogates of progression to kidney failure exist specifically for clinical trials. The International Society of Nephrology convened an international multi-stakeholder meeting to develop consensus on this topic. A core group, experienced in design, conduct, and outcome adjudication of clinical trials, developed a database of 64 randomized trials and the 163 included definitions relevant to kidney failure. Using an iterative process, a set of proposed consensus definitions were developed and subsequently vetted by the larger multi-stakeholder group of 83 participants representing 18 different countries. The consensus of the meeting participants was that clinical trial kidney failure outcomes should be comprised of a composite that includes receipt of a kidney transplant, initiation of maintenance dialysis, and death from kidney failure; it may also include outcomes based solely on laboratory measurements of glomerular filtration rate: a sustained low glomerular filtration rate and a sustained percent decline in glomerular filtration rate. Discussion included important considerations, such as (i) recognition of existing nomenclature for kidney failure; (ii) applicability across resource settings; (iii) ease of understanding for all stakeholders; and (iv) avoidance of inappropriate complexity so that the definitions can be used across ranges of populations and trial methodologies. The final definitions reflect the consensus for use in clinical trials.

Kidney disease and care among First Nations people with diabetes in Ontario: a population-based cohort study.

BACKGROUND: End-stage kidney disease is a serious complication of diabetes. We describe the prevalence of chronic kidney disease, prevalence and incidence of end-stage kidney disease and quality of care of early-stage chronic kidney disease for First Nations people with diabetes compared to other Ontarians with diabetes. METHODS: We conducted a retrospective cohort study in Ontario using linked administrative data at ICES. We included adults with incident diabetes between 1994 and 2014, and used laboratory values to identify kidney disease and quality indicators for care for early-stage disease. We compared measures in First Nations people to those in other people in Ontario, and used direct age and sex standardization. We used Cox proportional hazards regression to compare the incidence of end-stage kidney disease between groups. RESULTS: Our study included 21 968 First Nations people with diabetes. The age- and sex-standardized prevalence of chronic kidney disease was higher for First Nations people than for other Ontarians (20.7% v. 18.4%), as was the prevalence of end-stage kidney disease (2.9% v. 1.0%). The incidence of end-stage kidney disease was higher among First Nations people than among other people in Ontario (9.3 v. 4.7 events per 10 000 person-years; age- and sex-adjusted hazard ratio 2.23, 95% confidence interval 1.72-2.89). The 2 groups were similarly likely to receive recommended medications, but First Nations people were less likely to receive laboratory tests for their kidney disease. INTERPRETATION: Despite receiving similar quality of care for early-stage kidney disease, First Nations people with diabetes had higher rates of end-stage kidney disease than other Ontarians. Further research is needed to better understand contributing factors to help inform future interventions.