The Can-SOLVE CKD Network is uniquely placed to take a leadership role in strengthening Canada’s kidney research environment.
We are creating new tools, infrastructure, and training designed to bridge knowledge gaps and facilitate greater involvement of patient partners. Resources such as KidneyLink, the Canadian Nephrology Trials Network, and our patient-oriented research training modules will increase research participation, enable robust clinical trials, and enhance the skills and knowledge of all who take part in patient-oriented research.
In this issue of The Kidney Quarterly, we look at some of the ways Can-SOLVE CKD is building Canada’s capacity for kidney research innovation.
Learning Tree cultivates skills for patient-oriented research
Patient-oriented research was still an emerging concept when the Can-SOLVE CKD Network launched in 2016. While researchers and patients were keen to work together, the path to effective partnership was not always clear.
Fast forward six years, and Can-SOLVE CKD has developed a wealth of training resources to support collaboration between researchers and patient partners.
The five modules created to date are known collectively as branches in the Can-SOLVE CKD “Learning Tree.” These modules have provided network members with foundational knowledge that enhanced Phase 1 research studies and will support implementation of research findings during the network’s second phase.
“I think each branch of the Learning Tree builds capacity in its own way,” says Leah Getchell, Patient Partnerships and Training Lead, who
co-led development of the tree.
The first branch is the patient engagement toolkit, which provides guidelines on how to include patient partners meaningfully in the research process.
“One of the newest tools in the patient engagement toolkit, which will be really helpful for Phase 2, is the patient engagement roadmap,” explains Getchell. She notes the roadmap can help teams identify where and how patients can be most impactful as they develop implementation plans.
The five branches of the Can-SOLVE CKD Learning Tree
Another branch that will be useful for Can-SOLVE CKD members as they implement their research findings is the Knowledge Translation Principles branch. This module involves teachings to help research teams translate their findings into clinical practice. Along with a KT toolkit that is freely accessible online, a series of webinars and meetings (through the KT Community of Practice) is available to support teams in implementing their research.
Getchell also notes that the Wabishki Bizhiko Skaanj learning pathway, another branch of the Learning Tree, has been a particularly useful tool in guiding non-Indigenous people to engage respectfully with Indigenous people and communities. This is a continuous learning process that members can carry on during Phase 2, Getchell notes.
With the five learning branches now complete, Getchell wants to take these teachings and share them broadly across Canada’s patient-oriented research community.
“I think [the Learning Tree] has absolutely changed the way that research is done [within Can-SOLVE CKD],” says Getchell. “I think the challenge now, which is the goal of Phase 2 [of the network], is to bring this way of doing research to the rest of the Canadian research community.”
This year, Can-SOLVE CKD published an article in the Canadian Journal of Kidney Disease and Health highlighting the five learning modules. The modules have also been presented at national and international conferences and promoted through various online platforms online (e.g., social media, webinars).
Getchell says Can-SOLVE CKD will continue to explore ways of bringing the Learning Tree to the broader kidney research community in Canada. “The best is yet to come,” she says. “The more we can engage patient partners and researchers, the better.”
“The Learning Tree has absolutely changed the way that research is done within Can-SOLVE CKD.”
Patient Partnership & Training Lead
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INDIGENOUS CULTURAL COMPETENCY
New position strengthens commitment to cultural competency
In the 1990s in New Zealand, a Māori nurse named Irihapeti Ramsden noticed that her Indigenous peers were receiving inadequate and inequitable health care. She saw the need to create an environment in health care and research that was culturally safe for Indigenous people – accounting for the impacts of colonialism and restoring meaningful Indigenous ways of knowing, being, and doing into health care practice.
To develop culturally safe spaces, non-Indigenous people working in health care and research must be culturally competent – meaning they must have the knowledge, willingness, and ability to work respectfully with Indigenous people. Since Ramsden first described the concept of cultural safety and competency, it has since taken root in many colonized countries around the world, including Canada.
Can-SOLVE CKD recognizes the importance of cultural competency and seeks to integrate it across the network under the guidance of the Indigenous Peoples’ Engagement and Research Council (IPERC). As part of this commitment, former IPERC coordinator Craig Settee has taken on a new role as the network’s Cultural Competency Manager.
Settee, who is Cree/Anishinaabe and a citizen of Fisher River Cree Nation (Treaty 5 Territory), has been the IPERC coordinator since 2018. He has guided many projects aimed at fostering cultural competency within Can-SOLVE CKD, including the development of the Wabishki Bizhiko Skaanj learning pathway, a bundle of trainings to support researchers and their teams in their cultural competency journey.
He sees much value in researchers engaging in such a journey, noting that cultural competency can help them better understand historical factors and Indigenous determinants of health that influence the wellness of Indigenous peoples.
“[At Can-SOLVE CKD] we’re talking about increasing kidney care for all Canadians, and because kidney disease affects Indigenous people at a higher rate, researchers need to ensure that the research they’re doing is culturally competent and includes Indigenous perspectives,” explains Settee.
The new role will involve continuing to help develop and implement the Wabishki Bizhiko Skaanj learning pathway – for example, by maintaining the Cultural Competency Knowledge Bundle. Settee is particularly excited to develop a set of videos to build upon the Knowledge Keepers in Research virtual book. These videos will feature interviews with Knowledge Keepers discussing the importance of traditional knowledge and how to apply it to health care.
Settee’s new role will also involve initiatives beyond the learning pathway. “One of the main points for this role is to really ensure that Indigenous ways of knowing, doing, and being are included in the network activities,” explains Settee, “Another really important [part of the role] is to stay connected with other [research] groups that are doing similar [cultural competency] work, and maybe we can work in partnership in some capacity.”
Notably, IPERC members Dr. Mary Wilson and Helen Robinson-Settee will attend the 2022 World Indigenous Peoples Conference on Education in Adelaide, Australia, where they will further share the network’s cultural competency learnings. Settee says he would like to support more international collaborations like this in his new role.
In the meantime, the search for a new IPERC coordinator is underway. “I’m excited to see another Indigenous member join the team, who can bring their perspectives, stories and expertise to the group,” says Settee. “I’m looking forward to working with the incoming IPERC coordinator and what the future brings with them.”
“[At Can-SOLVE CKD] we’re talking about increasing kidney care for all Canadians, and because kidney disease affects Indigenous people at a higher rate, researchers need to ensure that the research they’re doing is culturally competent and includes Indigenous perspectives,”
Cultural Competency Manager
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Unlocking KidneyLink’s potential for patient-researcher connections
Patients have a tremendous amount to contribute to health research. But not everyone knows where to start or how to get involved.
To help interested patients connect with researchers looking to work with them, Can-SOLVE CKD created the online tool KidneyLink.
KidneyLink offers a platform where researchers can announce upcoming trials and studies, recruit patients, and share research results. Patients can use KidneyLink to learn about relevant participation opportunities and access skills training to participate effectively in research.
To date, KidneyLink has more than 500 registered users. With the launch of Can-SOLVE CKD Phase 2, the network has ambitious plans to enhance the site and maximize its use across the Canadian kidney community.
“We’ve got a good foundation in place and now we’re looking to build on that,” explains Graham Pollock, Communications and Stakeholder Engagement Lead at Can-SOLVE CKD. “Our vision is that KidneyLink will be a robust tool at the centre of all kidney research taking place in Canada.”
On July 5, more than 40 people in the kidney research community – including researchers and patient partners – came together at a virtual workshop to brainstorm ways of increasing KidneyLink’s uptake and further tailoring it to the community’s needs. Attendees imagined what an ideal KidneyLink platform might look like and described the features and functions it would offer to both patients and researchers. The group also discussed barriers to widespread adoption of KidneyLink and proposed solutions to overcome these challenges. A detailed summary report outlines the workshop’s main findings.
Pollock says there was a lot of great feedback from this workshop. Some suggestions that arose during this discussion include eliminating login requirements and making it clearer that KidneyLink is for the entire kidney community, not just Can-SOLVE CKD members.
A new working group, including people with diverse experiences, perspectives and backgrounds, will lead the redevelopment of KidneyLink. The working group held its first meeting in September and aims to officially unveil KidneyLink 2.0, along with a refined marketing and outreach plan, in the new year.
“I think I’m most looking forward to seeing this idea realize its potential,” says Pollock, noting that the concept for KidneyLink has been part of Can-SOLVE CKD from the very beginning. “We want to build something that will grow into an indispensable tool for the kidney community with a user base measured in the thousands. This is a chance to really capitalize on the potential that this model has.”
“Our vision is that KidneyLink will be a robust tool at the centre of all kidney research taking place in Canada.”
Communications & External Relations Lead
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CANADIAN NEPHROLOGY TRIALS NETWORK
Fostering excellence in nephrology trials
Clinical trials research in Canada is an evolving, dynamic landscape.
The Canadian Nephrology Trials Network (CNTN) was created to support and strengthen collaboration between researchers working in the field and patient partners eager to learn how they can use their lived experience to shape the research.
CNTN aims to improve the relevance, number, and quality of nephrology clinical trials in Canada. Its mission is to enhance researchers’ ability to conduct multi-centre trials that will increase our knowledge of chronic kidney disease. The network also aims to help integrate patient priorities into care and practice through increased peer review, engagement, and training.
CNTN is finding new ways to involve patients in the clinical trials review process. “We are showing patients how they can become involved in randomized clinical trials,” said CNTN Project Manager Alicia Murdoch, “and that even though patients may not understand the science, they can still be involved in the process.”
Supporting network members and the larger clinical trials community through peer review is a key function of CNTN. All trial submissions are reviewed by the CNTN Scientific Operations Committee, which consists of researchers and patient partners. The network is also developing a “Patient Partners in CNTN Peer Review” module to help demonstrate the value of including patients in the peer review process. “The support we offer in peer review and patient engagement is starting to get noticed by funders,” says Murdoch, “which is great that this is a strength that is acknowledged.”
CNTN is finding new ways to involve patient partners in the clinical trials review process.
Communication and knowledge translation are important for building capacity and encouraging clinicians to get involved in research. CNTN encourages researchers to post trials seeking recruitment on KidneyLink and to share their results on the CNTN website.
“It is important to get clinicians to talk their patients about research, tell them this is a study you might be interested in,” says Murdoch. “Build capacity for those [clinicians] who do want to take part and don’t have access. And, as well, finding a way to include those who don’t have the capacity to take on the research but getting them excited and interested in sharing research with their patients.”
This year the network debuted the CNTN Spotlight Podcast featuring engaging conversations with both clinicians and patient partners about various topics of importance in clinical research. The podcast gives researchers an opportunity to highlight their research and for patient partners to speak about their roles within the network.
It is important to note that the evolution of clinical research in Canada will bring new opportunities and new opportunities for capacity building. “As we get clinicians to start talking to their patients more about research,” Murdoch says, “there is going to be a next step to that process and how do we support them. Capacity building is always evolving.”
“I think a lot will change in the clinical trial landscape and the trajectory will continue as we learn more about what can be done and new ideas emerge about how to engage patient partners. There is so much more room for growth in patient engagement and how to involve patient partners in clinical trials. I think we are really just getting started.”
Stay connected with CNTN by signing up to receive the quarterly newsletter (now available in French) for events, publications from network members, and news from the Canadian nephrology research community. You can find CNTN on Twitter @CNTN_RCEN. If you have any questions about the network, or are looking for way to get involved, reach out to Alicia at email@example.com.
“We are showing patients how they can become involved in randomized clinical trials and that even though patients may not understand the science, they can still be involved in the process.”