juin 17, 2026

10 Years of Patient Partnership in Action

This story is part of a special series marking Can-SOLVE CKD’s 10th anniversary. Through the voices and experiences of patients, researchers, clinicians, and partners, the series explores the impact and legacy of patient-oriented kidney research in Canada.

As Can-SOLVE CKD marks its 10th anniversary, National Indigenous History Month offers an opportunity to reflect on the role the Indigenous Peoples’ Engagement and Research Council (IPERC) has played in strengthening Indigenous leadership in patient-oriented research.  

“The impact that I’ve seen for patients and families is [that it’s] finally given people a voice,” says Cathy Woods, a member of Naicatchewenin First Nation, founding patient partner of the Can-SOLVE CKD Network, and current co-chair of IPERC. 

Historically, research involving Indigenous peoples was often conducted on communities rather than with them. Over the past decade, IPERC has helped foster a different approach—one grounded in relationship-building, accountability, shared learning, and Indigenous leadership in research and decision-making.  

IPERC’s creation in 2016 reflected a growing recognition that meaningful Indigenous engagement requires more than consultation. Through its governance and advisory role within Can-SOLVE CKD, the council has helped ensure that Indigenous perspectives, priorities, and lived experiences are reflected in the network’s work.  

Bringing together First Nations, Métis, and Inuit patient partners, caregivers, living kidney donors, transplant recipients, health care providers, researchers, Knowledge Keepers, and community advocates, the council has played an important role in guiding conversations about kidney health research, cultural safety, and Indigenous engagement. 

“IPERC was created to ensure Indigenous voices are meaningfully included in research,” says Jocelyn Jones, a member of Shoal Lake 40 First Nation and Indigenous Initiatives Manager at Can-SOLVE CKD. “We continue to advocate for Indigenous leadership and representation while creating spaces where Indigenous people can help shape and guide research.” 

Creating space for Indigenous leadership

While IPERC has helped shape research, its impact extends beyond projects and policies. 

For Cathy, one of the council’s most meaningful accomplishments has been creating opportunities for Indigenous patients and families to become active participants in research and decision-making. 

“It’s given people confidence,” she says. “It’s given them the ability to advocate for themselves and their families.” 

Jocelyn has witnessed that growth firsthand. 

“Watching somebody who might not have been comfortable speaking publicly or even sharing their story, and then seeing them able to do that, is incredible,” she says. 

IPERC has grown into a diverse community that extends beyond kidney health alone. While many members bring lived experience with kidney disease, others contribute expertise in Indigenous health, education, advocacy, research, and community leadership. Together, these perspectives help ensure discussions are informed by a broader understanding of Indigenous wellness and community priorities. 

At the heart of that work are relationships. 

“The relationships are the most important piece before research projects even start,” says Jocelyn. 

Indigenous Initiatives Manager and IPERC Coordinator Jocelyn Jones (l.) and IPERC Co-Chair Cathy Woods (r.)

Changing how research happens

The council has also helped strengthen cultural safety and awareness across the Can-SOLVE CKD Network. 

Can-SOLVE CKD supports network members to complete foundational learning opportunities such as San’yas Indigenous Cultural Safety Training and training on OCAP® principles (Ownership, Control, Access, and Possession). These resources help build understanding of Indigenous histories, rights, data sovereignty, and respectful approaches to engagement and research. 

Learning opportunities are also featured on the network’s website within the Learning Pathway, a collection of modules and resources that encourage ongoing learning about Indigenous perspectives, cultural safety, anti-racism, and reconciliation. 

Beyond formal training, IPERC has created opportunities for researchers to learn directly from Indigenous patient partners, Knowledge Keepers, and communities. Through ongoing dialogue and relationship-building, the council has helped strengthen understanding of Indigenous priorities and perspectives across the network. 

For Cathy, this is at the core of IPERC’s legacy.

“To see patients [not only] involved in research, but actually leading research and continuing to work with researchers,” she says. 

She believes those partnerships have helped strengthen research while improving outcomes for patients and families. 

“We have made a difference to researchers through our involvement. It enhances their research and makes it more valuable for us as patients. Collaborating with researchers helps improve quality of life for patients and their caregivers.” 

From relationships to impact

IPERC’s influence can be seen in research projects and educational resources such as the Meno Ya Win – Indigenous Kidney Health series, a video series co-developed with Indigenous people living with chronic kidney disease, caregivers, researchers, and Knowledge Keepers. Through Indigenous stories, experiences, and perspectives, the resource supports informed decision-making and understanding of kidney disease and treatment options. 

Another Can-SOLVE CKD initiative, the iCARE project, partnered with Indigenous youth, families, and caregivers to develop and validate a culturally grounded tool that supports earlier identification of kidney disease in Indigenous youth living with type 2 diabetes. Community engagement helped shape not only the tool itself, but also the implementation strategies and patient-facing resources designed to support its use, helping ensure the project reflects the priorities and experiences of the communities it aims to serve. 

Meno Ya Win and iCARE reflect a broader shift that IPERC has helped foster across the Can-SOLVE CKD Network. Indigenous perspectives are not brought into research after decisions have been made—they help inform research priorities, project design, implementation planning, and knowledge sharing from the outset. In doing so, IPERC has helped strengthen more collaborative, culturally responsive approaches to patient-oriented research.  

Researchers Dr. Joanne Kappel, who led the development of Meno Ya Win through the Treatment Options project, and Dr. Allison Dart, project co-lead of the iCARE project, also participated in IPERC as members-at-large. These relationships created opportunities for ongoing dialogue between research teams and council members, fostering learning in both directions. 

Today, researchers from within and beyond the network increasingly seek guidance from IPERC when developing projects involving Indigenous peoples and communities. This growing recognition reflects the council’s role as a trusted source of insight on Indigenous engagement, relationship-building, and culturally safe research practices. 

Highlights from 10 years of Indigenous initiatives, partnerships, and impact across the network.

Looking ahead

While much has been accomplished over the past decade, both Cathy and Jocelyn agree that the work continues. 

The council is now exploring opportunities to strengthen Indigenous engagement and leadership in research, support recruitment and sustainability, and continue advancing culturally safe approaches to kidney health research. More recently, conversations have also explored distinctions-based approaches that recognize the unique priorities and experiences of First Nations, Inuit, and Métis peoples. 

As Can-SOLVE CKD looks toward the future, Jocelyn hopes IPERC will continue to evolve while remaining grounded in Indigenous leadership. 

“Having Indigenous voices in our leadership and leading the work is super important,” she says. 

Ten years after its formation, IPERC’s impact can be seen in the research it has influenced, the leaders it has supported, the partnerships it has strengthened, and the communities it continues to serve. As the council enters its next chapter, it remains an important voice helping guide how kidney health research is conducted alongside Indigenous peoples and communities across Canada.  

“I am so proud of the legacy that we have created,” says Cathy.  

Interested in learning more?

Visit the Indigenous Initiatives page to explore Indigenous-led projects, resources, and the work of the Indigenous Peoples’ Engagement and Research Council (IPERC). Questions about Indigenous engagement and partnership opportunities can be directed to Jocelyn Jones, Indigenous Initiatives Manager, at jocelyn.jones@ubc.ca.