Our Indigenous Peoples’ Engagement and Research Council (IPERC) Coordinator, Craig Settee, and his brother Kevin spoke at the World Congress of Nephrology in Melbourne in April. The meeting focused on transplantation for First Nations people. Craig is a living kidney donor to Kevin and has been actively involved in IPERC’s activities, including the development of the Wabishki Bizhiko Skaanj Learning Pathway. Both Craig and Kevin spoke about their patient experience with kidney disease and transplantation at the event. Craig and Kevin also conducted a presentation to discuss what consumer engagement in kidney disease research may look like and considerations for meaningful engagement.
The experience was meaningful for all, and both Craig and Kevin shared their reflections on the significance of the meeting both personally and for the larger mission of Can-SOLVE CKD.
Watch a recap of the three presentations below:
Click HERE to view Craig’s full Speech.
Click HERE to view Kevin’s full speech.
Reflections from Craig Settee
The experience at the ISN – World Congress of Nephrology is a memory I will cherish for a number of reasons. One reason is the ability to travel with my brother – to share stories and experiences of our kidney journey among an International audience. A second reason is hearing some of our experiences in the stories from across the globe.
The First Nations Satellite Symposia was one of the highlights of attending the WCN for me. The connection of kidney experiences from Canada, Australia and New Zealand was apparent. It was empowering to share the stage with the Canadian group – Dr. Jag Gill, Dr. Kelsey Louie, and fellow transplant recipient/donor storytellers Chris and Mary Smith (son/mother duo).
We also participated in moderated poster sessions where three Can-SOLVE CKD posters were showcased. The ones we shared are: 1) Respectful engagement of Indigenous peoples in a pan-Canadian kidney research network; 2) Patient Engagement in Knowledge Translation (KT) – a collaborative model for moving kidney research into practice; and 3) Collaborative Peer-Review Model – Patient Partners as Equal and Contributing Voices in Patient-Oriented Research.
These sessions provided us time and space to share some of the Can-SOLVE CKD work and talk to people from around the world.
The inaugural ISN/WCN Community Film Awards also took place during one of the evenings.
I appreciated this part of the conference because it really showcased the variety of stories that people have and how they choose to share their kidney journey through video. I would encourage people to view them at the ISN website – humorous, uplifting, real and leading are words and emotions that these videos took me through.
I am grateful to have been invited to share my story, to hear other peoples’ stories and to carry some of the teachings from the experiences in Australia and at the World Congress of Nephrology.
Miigwetch, Kinanaskomitinawaw, Thank you.
Reflections from Kevin Settee
It was an honour and privilege to present and network with people from around the world at the ISN World Congress of Nephrology. We were quite busy, with giving two talks and presenting at the Patient and Carer Forum.
In our first talk, we presented at the Transplant and Society of Australia and New Zealand (TSANZ) First Nation Kidney Health, with a focus on Kidney Transplantation. We presented 15 minutes and we both shared our experience related to our transplantation. One of the things that I took away from the Symposia was that our collective stories, as Indigenous peoples from Canada, Australia, and New Zealand, are kin. Our experiences are different and one and the same. Our roads to getting transplants varied – in the time between diagnosis to transplant, types of kidney disease, kidney replacement therapy, family experiences, and reasons for the decision on the type of dialysis. The patient experiences are very similar as well in terms of the equity gaps in access to health care, systemic racism, and access to transplantation. It finished with a panel, where we all had an opportunity to answer questions from the crowd.
We also attended and participated in the Standardized Outcomes in Nephrology (SONG-GD Initiative). The workshops enabled us to participate in establishing core outcomes for research in glomerular disease (GD), globally. We participated in both the SONG-GD and SONG-Kids workshops. We respectfully debated and discussed which outcomes meant the most and which should be used, or withdrawn from the list. Some groups also combined outcomes because they felt they deserved to be together. There was a lot of discussion in both workshops. Being at the SONG-Kids workshop really reminded me of why I am involved in the network, and why we do this work.
We also presented at the BEAT-CKD Patient and Carer forum. We talked about patient/consumer involvement in kidney disease research. We talked about the Can-SOLVE CKD Network, a few of the projects we are working on, and the pros and cons. We were able to talk about how it feels like a real network, the Wabishki Bizhiko Skaanj Learning Pathway, and some of the projects. We presented along with other Indigenous communities from Australia, New Zealand, and the Pacific islands. People shared that Canada is really leading the world when it comes to engaging patients/consumers in kidney health research. People shared that they would love to remain connected, to collaborate and build connections to continue moving forward on patient-centered care.
Thank you for this opportunity to travel, and network with people from around the world.
The Can-SOLVE CKD Network is proud to work with Indigenous patients, researchers, caregivers, and Elders to ensure our research program is informed by and responsive to Indigenous perspectives. Thank you to both Craig and Kevin for sharing their experiences and representing the Can-SOLVE CKD Network abroad!
For more information about the one-day event held at the Melbourne Convention and Exhibition Centre (MCEC), in Melbourne Australia, click HERE.