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.

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.

Kidney Check Point-of-Care Testing-Furthering Patient Engagement and Patient-Centered Care in Canada's Rural and Remote Indigenous Communities: Program Report.

PURPOSE OF PROGRAM: Access to health care services remains a significant barrier for many Indigenous people's living in rural and remote regions of Canada. Driven by geographical isolation and compounded by socioeconomic and environmental disparities, individuals living under these circumstances face disproportionately poor health outcomes. Kidney Check is a comprehensive screening, triage, and treatment initiative working to bring culturally safe preventive care to rural and remote Indigenous communities across Manitoba, Ontario, BC, Alberta, and Saskatchewan. The project's patient-oriented approach addresses concerns raised by kidney patients and their caregivers using culturally safe practices. Using the various expertise of their multidisciplinary team, Kidney Check seeks to further collaborative efforts to improve access to preventive health care for these groups. Meaningful engagement with patients, communities, and local health care stakeholders ensures Indigenous voices are heard and incorporated into the project in a way that promotes shared decision-making and sustainability. SOURCES OF INFORMATION: As an affiliate program of the Can-SOLVE CKD Network, Kidney Check's guiding priorities were developed over 3 years of patient consultation and finalized during 2 workshops held with more than 30 patients, caregivers, Indigenous peoples, researchers, and policy makers using a modified Delphi process. Today, patients continue to participate in project development via 2 governing bodies: The Patient Governance Circle and the Indigenous Peoples Engagement and Research Council (IPERC). METHODS: Modeled after the Indigenous-led 2015 FINISHED project in Manitoba, Kidney Check employs point-of-care testing to identify diabetes, hypertension, and chronic kidney disease (CKD) in individuals, ages 10 and above, regardless of pre-existing risk factors. The Kidney Check team consists of 4 working groups: project leadership, provincial management, local community partners, and patient partners. By using and building on existing relationships between local and provincial health care stakeholders and various Indigenous communities, the program furthers collaborative efforts to bridge gaps in health equity. KEY FINDINGS: The Kidney Check program has established an infrastructure that integrates patient engagement at all stages of the program from priority setting to deployment and dissemination strategies. LIMITATIONS: While we encourage and offer screening services to all, many still choose not to attend for a variety of reasons which may introduce selection bias. Kidney Check uses patient engagement as a foundational component of the program; however, there is currently a limited amount of research documenting the benefits of patient engagement in health care settings. More formal qualitative evaluations of these activities are needed. In addition, as the COVID-19 pandemic has halted screening procedures in most communities, we currently do not have quantitative data to support the efficacy of the Kidney Check program. IMPLICATIONS: For many Indigenous people, lack of accessibility to health care services is compounded by sociopolitical barriers that disrupt relationships between patients and providers. Meaningful engagement presents one opportunity to ensure the voices and perspectives of Indigenous patients and communities are incorporated into health services. In addition, this screening paradigm has shown to be cost effective as shown by analyses done on the FINISHED screening program.

OBJECTIFS DU PROGRAMME: L'accès aux services de santé demeure un obstacle important pour de nombreuses populations autochtones vivant dans les régions rurales et éloignées du Canada. En raison de l'isolement géographique et de disparités environnementales et socio-économiques, les personnes vivant dans ces situations sont confrontées à de pauvres conditions de santé. Kidney Check est une initiative complète de dépistage, de triage et de traitement qui vise à offrir des soins préventifs et respectueux de leurs valeurs culturelles aux communautés autochtones rurales et éloignées du Manitoba, de l'Ontario, de la Colombie-Britannique, de l'Alberta et de la Saskatchewan. L'approche axée sur le patient répond aux préoccupations soulevées par les patients atteints de néphropathies et leurs soignants grâce à des pratiques adaptées à leur culture. En exploitant les compétences d'une équipe multidisciplinaire, Kidney Check s'efforce de poursuivre les efforts de collaboration visant l'amélioration de l'accès à des soins de santé préventifs pour ces groupes. Un engagement significatif des patients, des communautés et des acteurs locaux du secteur de la santé garantit que les voix autochtones sont entendues et intégrées dans le projet d'une manière qui favorise la pérennité et la prise de décision partagée. SOURCES: Kidney Check étant un programme affilié du réseau CAN-SOLVE CKD, ses priorités directrices ont été élaborées à partir d'une consultation de 3 ans auprès des patients et finalisées au cours de deux ateliers utilisant une version modifiée de la méthode Delphi et réunissant plus d'une trentaine de patients, soignants, membres des communautés autochtones, chercheurs et décideurs. Les patients continuent à ce jour de participer au développement du projet par l'entremise de deux organes directeurs: le Conseil des patients et le Conseil de la recherche et de l'engagement des peuples autochtones (IPICER). MÉTHODOLOGIE: Inspiré du projet de dépistage FINISHED mené en 2015 auprès des Autochtones du Manitoba, Kidney Check utilise des tests au point de service pour dépister le diabète, l'hypertension et l'insuffisance rénale chronique chez les personnes âgées de 10 ans et plus, quels que soient les facteurs de risque préexistants. L'équipe de Kidney Check se compose de quatre groupes de travail: direction du projet, gestion provinciale, partenaires communautaires locaux et patients partenaires. En utilisant et en s'appuyant sur les relations existantes entre les intervenants locaux et provinciaux du secteur de la santé et les diverses communautés autochtones, le programme favorise les efforts de collaboration pour combler les écarts en matière d'équité en santé. PRINCIPAUX RÉSULTATS: Le programme Kidney Check a mis en place une infrastructure impliquant la participation des patients à toutes les étapes du programme, de l'établissement des priorités aux stratégies de déploiement et de diffusion. LIMITES: Nous encourageons et offrons ces services de dépistage à tous, mais, pour diverses raisons, beaucoup choisissent de ne pas y participer, ce qui peut introduire un biais de sélection. La participation des patients est un élément fondamental du programme Kidney Check; néanmoins, les avantages d'un engagement des patients dans les établissements de soins de santé demeurent peu documentés. Davantage d'évaluations qualitatives formelles de ces activités sont donc nécessaires. De plus, la pandémie de COVID-19 ayant interrompu les procédures de dépistage dans la plupart des collectivités, nous ne disposons pas actuellement de données quantitatives pour soutenir l'efficacité du programme. CONCLUSION: Pour de nombreuses populations autochtones, le manque d'accessibilité aux services de santé est aggravé par des obstacles sociopolitiques qui perturbent les relations entre les patients et les fournisseurs de soins. La participation significative des patients et des communautés autochtones permet d'assurer que leurs voix et perspectives soient intégrées dans les services de santé. En outre, ce paradigme de dépistage s'est révélé rentable, comme le montrent les analyses effectuées sur le programme de dépistage FINISHED.

Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD): Form and Function.

PURPOSE OF REVIEW: This article serves to describe the Can-SOLVE CKD network, a program of research projects and infrastructure that has excited patients and given them hope that we can truly transform the care they receive. ISSUE: Chronic kidney disease (CKD) is a complex disorder that affects more than 4 million Canadians and costs the Canadian health care system more than $40 billion per year. The evidence base for guiding care in CKD is small, and even in areas where evidence exists, uptake of evidence into clinical practice has been slow. Compounding these complexities are the variations in outcomes for patients with CKD and difficulties predicting who is most likely to develop complications over time. Clearly these gaps in our knowledge and understanding of CKD need to be filled, but the current state of CKD research is not where it needs to be. A culture of clinical trials and inquiry into the disease is lacking, and much of the existing evidence base addresses the concerns of the researchers but not necessarily those of the patients. PROGRAM OVERVIEW: The Canadian Institutes of Health Research (CIHR) has launched the national Strategy for Patient-Oriented Research (SPOR), a coalition of federal, provincial, and territorial partners dedicated to integrating research into care. Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) is one of five pan-Canadian chronic kidney disease networks supported through the SPOR. The vision of Can-SOLVE CKD is that by 2020 every Canadian with or at high risk for CKD will receive the best recommended care, experience optimal outcomes, and have the opportunity to participate in studies with novel therapies, regardless of age, sex, gender, location, or ethnicity. PROGRAM OBJECTIVE: The overarching objective of Can-SOLVE CKD is to accelerate the translation of knowledge about CKD into clinical research and practice. By focusing on the patient's voice and implementing relevant findings in real time, Can-SOLVE CKD will transform the care that CKD patients receive, and will improve kidney health for future generations.

OBJECTIF DE LA REVUE: Le présent article décrit le réseau Can-SOLVE CKD, un réseau basé sur un programme de projets et d'infrastructures de recherche qui ont soulevé l'enthousiasme des patients et qui nourrissent leur espoir de voir une réelle réforme des soins qu'ils reçoivent. CONTEXTE: L'insuffisance rénale chronique (IRC) est un trouble complexe qui affecte plus de quatre millions de Canadiens et qui engendre au système de santé canadien des coûts annuels de l'ordre de 40 milliards de dollars. Les données probantes sous-tendant les soins en IRC sont rares, et dans les branches où ces données existent, leur intégration à la pratique clinique se montre insuffisante. Ces problèmes sont aggravés d'abord par la grande variabilité du pronostic de la maladie, puis par la difficulté de prévoir quels patients seront les plus susceptibles de développer des complications. Ces lacunes de connaissances et de compréhension de l'IRC doivent manifestement être comblées; cependant, force est de constater que la recherche actuelle sur l'IRC est inadéquate. Outre l'absence d'une culture médicale qui encourage les essais cliniques, les données recueillies rejoignent les préoccupations des chercheurs sans nécessairement refléter celles des patients. PRÉSENTATION DU PROGRAMME: Lancée par l'Institut de recherche en santé du Canada (IRSC), la Stratégie de recherche axée sur le patient (SRAP) consiste en une coalition de partenaires fédéraux, provinciaux et territoriaux visant l'intégration des résultats de la recherche dans les soins prodigués aux patients. Le réseau Can-SOLVE CKD (Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease) est l'un des cinq réseaux de recherche pancanadiens sur les maladies chroniques soutenus par la SRAP. L'objectif du réseau Can-SOLVE CKD est tripartite : on souhaite que, d'ici 2020, tous les Canadiens atteints d'IRC (ou à haut risque de développer la maladie) 1- reçoivent les meilleurs soins; 2- obtiennent des résultats de santé optimaux; 3- aient l'occasion de participer à des études cliniques pertinentes (et ce, sans égard à leur âge, leur sexe, leur ethnicité ou leur lieu de résidence). OBJECTIF DU PROGRAMME: L'objectif principal du réseau Can-SOLVE CKD est d'accélérer l'application des connaissances sur l'IRC, tant en recherche qu'en pratique clinique. En s'intéressant aux préoccupations des patients et en appliquant en temps réel les résultats pertinents de la recherche, Can-SOLVE CKD transformera la façon dont seront soignés les patients atteints d'IRC et améliorera la santé rénale globale des générations futures.