Welcome to the second edition of The Kidney Quarterly, a new publication dedicated to stories that highlight the Can-SOLVE CKD Network’s impact on Canadian kidney health research.
We are pleased to launch this issue on June 21, which is National Indigenous Peoples Day. It is a time to honour the history, heritage and diversity of Indigenous peoples. In this issue, we highlight several projects and initiatives focused on improving the kidney health of Indigenous peoples. We are committed to working with Indigenous patient partners, Knowledge Keepers, community leaders, academics, and health care providers to ensure the best kidney health outcomes, while ensuring Indigenous knowledge and perspectives are reflected across our research projects and governance.
A message from the Indigenous Peoples’ Engagement and Research Council (IPERC)
By Craig Settee,
Indigenous Peoples’ Engagement and Research Council Coordinator
Tansi, Aniin, Boozhoo, Hello. I would like to acknowledge and greet you from the traditional, unceded territory of the Coast Salish Peoples, home of the Musqueam, Tsleil-Waututh, and Squamish First Nations.
June is National Indigenous History Month which is a time to honour the history, heritage and diversity of Indigenous peoples. June 21 is National Indigenous Peoples Day and is a time for all Canadians to recognize and celebrate the unique heritage, diverse cultures and outstanding contributions of Inuit, Métis and First Nations. Ways to celebrate or commemorate Indigenous peoples can take place, not only this month, but throughout the year. I encourage you to check with your local Friendship Centre and other Indigenous community organizations for ways to support local Indigenous initiatives such as businesses and artists.
As we celebrate the achievements of Indigenous peoples, we must also acknowledge our history which includes the impact of colonialism. The uncovering of the remains of 215 Indigenous children at the Kamloops Indian Residential School is a stark reminder of the devastating impact of the residential school system. This is an issue that affects all Canadians; it is not only an Indigenous issue. It is our shared history. How might you begin to learn, or re-learn, the history of Indigenous peoples? Online training resources include OCAP (Ownership, Control, Access, Possession) and San’yas Indigenous Cultural Safety Training which provide foundational teachings on the histories of Indigenous peoples, their cultures, health and data sovereignty.
The Indigenous Peoples’ Engagement and Research Council (IPERC) and other Can-SOLVE CKD Network members at the 2019 Can-SOLVE CKD Annual Meeting
There are many steps in the path towards reconciliation. Building respectful relationships and working in collaboration with Indigenous peoples is the first step of many. I am grateful of the Indigenous initiatives throughout the Can-SOLVE CKD Network including Kidney Check, Treatment Options and iCARE. I wish to give thanks to the Indigenous patient partners and researchers throughout the network who are involved in these projects and committees working to improve quality of life and lead to better Indigenous health outcomes for kidney health research in Canada.
I give thanks to the committee members of IPERC who strive to ensure the unique needs and perspectives of Indigenous peoples are appropriately incorporated, addressed and respected. Members of the council include patients, families, caregivers, Knowledge Keepers and health professionals including nurses, doctors, and policy/decision makers.
Important work I would like to highlight is the Wabishki Bizhiko Skaanj (wah-bish-kih biish-ih-goo skaa-nch) Learning Pathway which aims to enhance researchers’ knowledge and awareness of racial biases, Indigenous voices and stories, the impact of colonization on Indigenous health, and culturally safe health research practices. There are various learning markers which encourage participants to look, listen, learn, and lead their way along the pathway.
“There are many steps in the path towards reconciliation. Building respectful relationships and working in collaboration with Indigenous peoples is the first step of many.”
Indigenous Peoples’ Engagement and Research Council Coordinator
Look within to observe and examine racial identities, privileges, and biases. Listen to Indigenous voices and stories by participating in interactive learning exercises, facilitated online modules and webinars. Learn by enhancing your knowledge of the history of colonization in Canada and its impacts on Indigenous peoples and their health. And last, but not least, lead by reflecting on the learning and making a commitment to take appropriate actions that will build genuine partnerships with Indigenous peoples and communities in the spirit of reconciliation.
Please visit cansolveckd.ca/learning-pathway on this National Indigenous Peoples Day. I encourage you to begin, or continue your journey, along the learning pathway as a step towards reconciliation.
Miigwetch, Ekosani, Thank you.
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New webinar series aims to inspire a deeper understanding of land acknowledgments
Most Canadians are familiar with land acknowledgments, whereby the traditional Indigenous territories are acknowledged before meetings, conferences, or other gatherings. But what is the true purpose of these acknowledgments and what do they mean to each of us?
At the most basic level, this practice brings to light the historic and current presence and stewardship of First Nations, Inuit and Métis people over the land. But, in truth, acknowledging the land has a much deeper meaning and purpose.
“Indigenous people have been invisible and misrepresented for decades, centuries really, and so land acknowledgment is a practice of acknowledging, honouring, respecting, and reclaiming those spaces that Indigenous peoples have occupied for time immemorial, and continue to do so,” explains Catherine Turner, a Métis woman and Senior Research Coordinator of Can-SOLVE CKD’s Kidney Check program.
For non-Indigenous people, saying a land acknowledgment can be difficult. It may involve directly or indirectly reflecting on the pain and suffering that colonization has caused for generations of Indigenous people, which is a difficult truth to confront.
“Being aware of history, true history, and realizing that it was different from what we were taught growing up is very important,” explains Mary Beaucage, an Anishinaabe woman from Nipissing First Nation (Robinson-Huron Treaty Territory) Ontario, Canada, and co-chair of Can-SOLVE CKD’s Indigenous Peoples Engagement and Research Council (IPERC). “There’s a rich history here and that has to be acknowledged and has to be brought [back] to life.”
To support members of Can-SOLVE CKD in understanding the importance of land acknowledgments, a working group of Indigenous and non-Indigenous members came together to create a new, four-part webinar series. After several months of busy planning, the webinar series is set to launch this summer.
The first webinar includes a panel of Can-SOLVE CKD members (including a researcher, patient partner and member of the Operations team) and cultural safety educator Harley Eagle of the Dakota/Ojibway First Nations, enrolled in the Whitecap Dakota First Nations Reserve. Mila Tang is a Project Manager with Can-SOLVE CKD who participated on the panel. She says that while it was an honour to participate, she knew the process would also challenge her. “I came into this project knowing that I had to be vulnerable to discomfort for personal growth to happen,” she explains.
Some key themes that she highlights after working on this project include reflecting on the meaning behind “unceded territory,” the history behind the land on which she stands, and how the land was in its natural state before colonization. She also notes that this was a chance to explore her own personal ties to the land, and reflect on the ways in which it nourishes and sustains life. “Without acknowledging the importance of how land plays such a big part in our human experience, we take it for granted,” she says.
“Being aware of history, true history, and realizing that it was different from what we were taught growing up is very important. There’s a rich history here and that has to be acknowledged and has to be brought back to life.”
Co-Chair, Indigenous Peoples’ Engagement and Research Council
Co-Chair, Patient Governance Circle
The second webinar includes teachings from two Knowledge Keepers, who discuss important topics such as traditional protocols for visiting the land of a neighbouring First Nation, as well as historical land dispossession experienced by Indigenous people. In the third webinar, Indigenous scholars dig deeper into land disposition issues, including how resource extraction affects Indigenous people. As well, they discuss the impact of treaties and the importance of water in land acknowledgments.
The final webinar is hosted by IPERC Coordinator Craig Settee, who is Cree/Anishinaabe and a registered member of Fisher River Cree Nation (Treaty 5 Territory), Manitoba, Canada. He provides a general overview of the webinar series and encourages people to take land acknowledgments one step further – by taking action on Truth and Reconciliation Commission recommendations.
“Land acknowledgments are a first step of many,” he emphasizes, noting that there are a number of Indigenous communities that are calling for actions to return land. “Part of allyship can be supporting Indigenous movements of returning land back to Indigenous people.”
To further support people in this process, the Land Acknowledgment working group is putting together a guidebook, which will summarize some key aspects of the webinars, include reflection questions, and direct people to resources for additional information and learning. All Can-SOLVE CKD members are encouraged to participate in the webinar series and explore their own thoughts and actions related to land acknowledgments.
Notably, this series was created out of a learning opportunity. Beaucage facilitated a land acknowledgment exercise with a group of non-Indigenous researchers and noticed some fumbling and awkwardness. She took the opportunity to write a letter to the group, many of whom had little exposure to acknowledging the Indigenous land they were living on. She wanted to educate people on the importance of land acknowledgements and how to do them respectfully. The letter served as a catalyst for the new webinar series and became the narration of the series’ introductory video.
“We don’t tell people that it’s prescriptive or in a certain format, because there has to be part of your heart in there as well,” explains Beaucage. “But it was more so to give people understanding and confidence in feeling that they can do this and they can do it well.”
Tang notes that land acknowledgments are an important opportunity to explore truth and awareness. She says, “If done authentically, it is an act of humility and gratitude, being curious of what we don’t know, a reminder of our dependence on the land, and inspiring others to do the same.”
Members of the Land Acknowledgment Working Group
This project was funded with the generous support of BC Renal.
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Kidney Check program explores safe ways of engaging Indigenous communities during COVID-19
In March 2020, Can-SOLVE CKD’s Kidney Check program had already screened more than 130 individuals in rural and remote Indigenous communities and was poised to be implemented on an even wider scale.
But like many projects during this time, COVID-19 disrupted plans abruptly – prompting the program’s coordinators to find new ways of partnering with First Nations communities to continue kidney screening.
One of the best ways to treat kidney disease is to identify it early and take preventative measures to slow disease progression. Yet many First Nations people, who are disproportionately affected by kidney disease, are living in remote communities and lack access to adequate kidney health screening and care. The Kidney Check program aims to address this problem by supporting First Nations communities in implementing local kidney health screening.
Catherine Turner is a Métis woman and the Senior Research Coordinator of the program in British Columbia. On March 13, 2020, she had just returned home after visiting a First Nations community that was about to implement the program. “The intention was to begin in-community screening the following week, but because of COVID we had to cancel,” she explains. “It was a new situation, nobody knew what it was going to look like in terms of the project.”
A Kidney Check screening event in 2019
Turner’s team began exploring ways that the program could continue to be delivered safely from afar. Kidney Check screening can be done by a local nurse who is already familiar with the community and who receives training through the program, or an external nurse who is brought in. This prompted the Kidney Check team to explore which community nurses would be potentially interested in virtual training sessions and moving forward with screening. “Some of the communities were more responsive to the idea and felt that they had the capacity to carry out screening. So as a team, [we] started to look at the option of a virtual training session,” says Turner.
They went on to develop a virtual training session program, which has already been successfully implemented for one First Nations community in BC, and the team plans to host another session with a separate community in July. Turner notes that the virtual sessions are less personal and do not allow for the practice of ceremonies, which is important for creating culturally safe spaces; however, she anticipates reengaging with these important in-person aspects of the program once COVID cases are lower and it is more safe to do so.
“A number of communities are participating in virtual training that will allow them to carry out screening activities until we are able to support the screening activities in person,” she says. “This will ensure that more individuals receive timely care and experience better outcomes.”
Senior Research Coordinator, BC Kidney Check
Heather Martin is the coordinator for the Kidney Check program in Manitoba, which is also adapting the program during COVID-19, but in a slightly different way. “The Manitoba team will use an integrated dataset containing population-level administrative health data that will allow us to find individuals with risk factors of chronic kidney disease and connect with them by mail,” she explains. “After being contacted, the individual can determine whether they would like to participate in screening and will have their lab tests done locally to initiate their kidney health check.”
She says her team expects that this approach will discover 20,000 to 30,000 adults in Manitoba and a trial sample of just over 3,000 will have kidney health checks by either their primary care team or directly with a physician’s assistant over the next year. “The Virtual Kidney Check and Follow up in Manitoba will offer an opportunity to reach more people using provincial health information that exists,” explains Martin. “It is an opportunity for the Manitoba Kidney Check team to prioritize in-person screening and an opportunity to continue offering kidney health checks to treat any problems earlier and access resources closer to home.”
Turner says that, despite the challenges that COVID-19 has posed, the BC Kidney Check project will continue to work in collaboration with participating communities and to support their readiness and self-determination to resume screening activities. “A number of communities are participating in virtual training that will allow them to carry out screening activities until we are able to support the screening activities in person,” she says. “This will ensure that more individuals receive timely care and experience better outcomes.”
Participants in a Kidney Check nurse training session held in Vancouver in 2019
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Transplant Ambassadors break down barriers to living kidney donation
Transplantation is often the preferred treatment for people with advanced chronic kidney disease. However, patients and donors considering this option do not always receive the information they need to make informed decisions.
To address this gap, a Can-SOLVE CKD research project has launched the Transplant Ambassador Program (TAP), a patient-led initiative that has made great strides in disseminating valuable information about transplantation to both patients and health professionals in renal units across Ontario.
Along with creating educational materials, Transplant Ambassadors make in-person appearances in kidney clinics. Each TAP team member has personal experience with kidney transplantation, either as a donor or recipient. If patients or health professionals in the clinic have questions about transplantation, the TAP patient partners are more than happy to share their real-world experience, answer questions, and dispel myths.
“We want to [break down] the barriers to living donation and we also want to provide information and support to patients along their journey,” explains Marian Reich, a kidney donor who is a Transplant Ambassador in Richmond Hill, Ontario. “People often feel better about transplantation after talking to someone who has done it. They don’t have to feel as afraid, they don’t have to feel as alone. And that’s the rewarding thing – when you can make a difference in someone’s life.”
Susan McKenzie (left) and Marian Reich share their transplant journey at the 2019 Canadian Society of Nephrology Annual General Meeting
Based on her experience, Reich has found this approach helpful for addressing misinformation about transplantation. For example, many people think that a donor must be a blood relative, which is not true. As well, some people assume that the recovery time from kidney transplantation is a long process (e.g., six months), when many people have a much quicker recovery time (e.g., six weeks).
Susan McKenzie is a patient partner co-leading the research project and who has been a TAP ambassador since its inception. She received a kidney from Reich, her sister-in-law. McKenzie emphasizes what a difference information from patients, to patients, can make. She says, “This is great, because as patients we know the more we can ‘naturalize the idea of transplantation’ for other patients – by being living breathing, accessible examples of transplant – the less frightening the idea becomes for patients when and if they get to that point in their kidney journey.
“When I was a patient, I never had the benefit of seeing or meeting anyone who had had a successful transplant and the idea was very scary,” says McKenzie.
TAP ambassadors have been making their rounds throughout 13 kidney clinics in Ontario since 2018. Over that same time period, there has been an increase in the number of living donations, although it’s not possible to say with certainty that the TAP program is the underlying reason for this increase. Nevertheless, the TAP ambassadors are pleased. “I’m very thrilled with the progress,” says Reich.
“People often feel better about transplantation after talking to someone who has done it. They don’t have to feel as afraid, they don’t have to feel as alone. And that’s the rewarding thing – when you can make a difference in someone’s life.”
Given how TAP ambassadors typically made in-person visits to kidney clinics, their work was affected by COVID. But when they could no longer do in-person visits, a new opportunity to reach more people emerged through virtual communication. As they shifted to virtual sessions, this allowed ambassadors to reach new patients and health professionals in other locations.
Reich says the TAP team also took the time to gather group profile information on all of the ambassadors (e.g., age, gender, transplantation status). This allows for patients or donor recipients to be better matched with ambassadors with the most relevant experience to that individual.
“So if there is a patient in a centre in Sudbury who wants to connect with an ambassador who has a similar lived background, we could perhaps find one from another active centre,” explains Reich.
There are currently more than 75 TAP ambassadors across Ontario who have completed more than 4,000 face to face meetings between January 2017 and March 2020. TAP is part of the larger Living Donor research project being completed by Can-SOLVE CKD.
Mary Beaucage brings undeniable leadership, passion, resilience to kidney research
“I always thought that this disease was bigger than me, and if I could make some difference, I would.”
Co-Chair, Indigenous Peoples’ Engagement and Research Council
Co-Chair, Patient Governance Circle
Mary Beaucage was already a passionate volunteer before joining the Can-SOLVE CKD Network.
As the recipient of a kidney transplant, she was sharing and using her lived experience to increase transplantation rates through the Nipissing Gift of Life Association, among many other volunteer efforts. In a stroke of luck for Can-SOLVE CKD, Beaucage became part of the network in 2016 and has contributed to many different Can-SOLVE CKD committees and projects since then. Her exemplary leadership within the network has resulted in her receiving the 2021 Barbara Ann LeGay Award for Patient-Oriented Research.
“The Barbara Ann LeGay Award for Patient-Oriented Research celebrates patient partner leaders in our Can-SOLVE CKD Network,” explains Mila Tang, a member of the Can-SOLVE CKD Operations Team who coordinated the award nominations this year. “The award also serves to commemorate Barb, an extraordinary person, blind at birth and who dealt with many medical illnesses including chronic kidney disease, but lived a full life. She worked hard for positive change in her community.”
Beaucage shares many of the same attributes as Barb, as well as the same passion for positive change. Beaucage was on dialysis for two years before receiving her transplant. “I saw people in my community coming and going when I was on dialysis,” she says. “I always thought that this disease was bigger than me, and if I could make some difference, I would.”
The scope of Can-SOLVE CKD committees and projects that Beaucage has been involved with over the years is vast and diverse. She is a member of the Knowledge User/Knowledge Translation Committee and the Research Operations Committee, and co-chair of the Patient Governance Circle. As a Nipissing First Nation woman, she also provides valuable insight and co-leadership within the Indigenous Peoples’ Engagement and Research Council (IPERC).
Through IPERC, Beaucage has taken on several important projects aimed at fostering Indigenous cultural competency in health care, including the development of the Wabishki Bizhiko Skaanj learning pathway and the Supporting Each Other’s Journey land acknowledgment webinar series that is set to launch this summer. But it’s not just IPERC’s projects that she is proud of. “Over the years, I’ve seen IPERC go from something that people are curious about to a group that people are looking to for advice, or support and feedback,” she says.
Mary Beaucage (far left) was one of six patient partners who took place in a January 2020 International Society of Nephrology workshop in Vancouver.
While Beaucage acknowledges that a shift towards greater cultural competency in health care and research won’t happen overnight, it has been rewarding to see more Indigenous ways of knowing being woven into the Can-SOLVE CKD culture. “Everything takes time, right? There is still so much more to do, but when you have an open willingness to make that change, and a way to ensure that change happens, it will happen,” she says.
Over the years, Beaucage has also presented at various conferences on behalf of the network, and worked hard to advance initiatives by the KU/KT committee. She says being comfortable talking in front of audiences has complemented this work well, and she loves being able to share Can-SOLVE CKD accomplishments with others outside of the network.
Beaucage emphasizes that winning the Barb LeGay Award means a lot to her, especially since she knew Barb personally. “Barb was a real spitfire, she was pretty kickass. She didn’t let anything stop her.”
The panel members who voted for this year’s winner see many similar qualities in Beaucage. Cynthia MacDonald is a member of the Operations Team who nominated Beaucage. “Mary exemplifies leadership and teamwork in all that she does. She is a role model to so many people (me included),” MacDonald wrote in her nomination form. “She is so deserving of this award and really puts her heart and soul in all that she participates in.”
Tang echoes similar sentiments. “The leadership, passion, patience, resilience, and gentleness that Mary brings to each meeting was undeniable and should be recognized and celebrated. Just like Barb, she continues to push the envelope to make healthcare better for all. She has made deep impressions on the people around her… Congratulations to Mary!”
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Research with Impact
We are creating new knowledge about kidney disease to answer patients’ most important questions.
Kidney disease has a strong impact on the health and wellness of Indigenous communities, and it is crucially important that we work to eliminate gaps in kidney health based on culture and geography.
Our research program includes three projects focused on developing and executing culturally appropriate research that will keep kidneys healthy and reassure communities and families about kidney wellness.
Understanding risks facing youth with type 2 diabetes
Little is known about why children with type 2 diabetes are at high risk for kidney disease , so the iCARE team is studying the most important risk factors in childhood that are linked with early signs of kidney disease.
iCARE is a national study that will recruit 400 children with type 2 diabetes across Canada. Based in Winnipeg, the study follows participants to assess both heart and kidney outcomes. The goal is to determine the risks that contribute to kidney damage in youth living with type 2 diabetes.
While high blood sugars and blood pressure have been the most important risk factors for adults, the iCARE participant advisory group suggested that mental health is critical, as well as access to social supports, healthy foods and places to be active. The iCARE team listened to patient partners and included these measures in the study. The team is now working to understand how mental health support can be made more available.
Kidney Check is a screening, triage, and treatment program using point-of-care testing and trained health care teams to bring kidney, diabetes, and blood pressure checks to First Nations communities.
Each participating community has the opportunity to design and work with the Can-SOLVE CKD team to develop a locally acceptable program, which helps to identify healthy kidneys as well as those with mild, moderate or severe kidney problems.
The results will be shared with participants in real time. Each person tested will also participate in building their own kidney health plan, including follow-up goals for maintaining kidney health.
In Canada, there are many educational materials or tools – such as booklets, websites and videos – for patients to learn about chronic kidney disease and treatment options. To meet the needs of patients who aren’t fluent in English or French, some of these tools have been translated into other languages. However, sometimes the content doesn’t translate well, and important cultural connections aren’t made. As a result, patients and families may not have the information they need to make informed decisions about treatment options.
To fill that gap, Can-SOLVE CKD researchers are working with Indigenous communities in Saskatchewan and Ontario to co-develop culturally specific educational materials. The materials will be tested in additional communities and ultimately shared with, and adapted by, other Indigenous communities across the country.