It has been an eventful and exciting year for all of us across the Can-SOLVE CKD Network. Thanks to the dedicated efforts of our members across the country, we have built a strong foundation for patient-oriented research. While much work remains, we are proud of the progress that has been made.
In this report, we are pleased to highlight activities from our first year that are helping to change the culture of kidney research in Canada. By listening to, learning from, and leading with patient partners, researchers, policy-makers, and funders, we will transform kidney disease care and outcomes for all Canadians.
On behalf of the entire Can-SOLVE CKD Network, thank you for your ongoing support. It is through partnership that all our work is possible, and we are proud to be moving forward together.
Dr. Adeera Levin and Dr. Braden Manns
Co-Principal Investigators, Can-SOLVE CKD Network
Listening, Learning, Leading
Can-SOLVE CKD Network Annual Report 2016/17
Listening
At its core, patient-oriented research is about listening. It is an open invitation for diverse voices to ask and answer the questions that drive the pursuit of better health.
The voices belong to those who are touched by a condition or disease every day, and they communicate hard-earned, real-world expertise. They include family members, caregivers, and friends, and they reflect Canada’s immense geographic and cultural diversity. Listening to these voices and the perspectives they represent allows researchers to design better studies and address the issues most important to patients.
Across the Can-SOLVE CKD Network, patient voices are at the centre of everything we do. Our research program addresses top priorities identified by people living with kidney disease, and patient partners support the design, execution, and communication of our 18 projects. By listening to patients, we are working to advance the culture of research and with it the health of all Canadians touched by kidney disease.
75
patient partners involved in Can-SOLVE CKD
29
Patient Council members
9
Patient Council members are Indigenous
7
research projects have designated Patient Leads
Listening to patient perspectives
Patient partners across Canada play a central role in guiding all Can-SOLVE CKD activities. These patients are diverse in sex, age, geography, and experience of kidney disease. Their involvement ensures the network addresses and respects the unique needs and perspectives of patients, including Indigenous peoples.
Michael McCormick
Marissa Nahanee
Carol Connolly & Ken Litchfield
Understanding what matters most
Can-SOLVE CKD aims to ensure the right patient receives the right treatment at the right time. But to truly understand the right treatment, we must consult the real experts: those who live with kidney disease every day.
That’s why we have been asking patients what matters to them from the very beginning.
“Long before the grant was submitted, work was already being done to help understand what matters most to patients, because that’s how you transform care and outcomes,” says co-principal investigator Dr. Adeera Levin.
Using the James Lind Alliance priority-setting method, we led a national consultation with patients, their families, and care providers to identify the top ten research priorities of people with kidney disease–in both early and advanced stages.
Understanding these priorities helped inform the design of 18 research projects based around three main themes:
- Defining CKD risk in youth with diabetes
- Identifying diabetes and CKD in Indigenous communities
- Glomerulonephritis translational research program
- Defining risk and personalizing treatment of patients with autosomal dominant polycystic kidney disease
- Integrating risk-based care for patients with CKD in the community
- Risk prediction to support shared decision-making for managing heart disease
- Impact of novel interventions to prevent loss of kidney function: Cell therapy
- Impact of novel interventions to prevent loss of kidney function: Clinical trials of promising re-purposed drugs for ADPKD
- Aldosterone inhibition and enhanced toxin removal in hemodialysis patients
- Assessing and optimally managing symptoms in patients with advanced CKD
- Restructuring kidney care to meet the needs of 21st century patients
- Targeted deprescribing in patients with chronic kidney disease to decrease polypharmacy
- Strategies to enhance patient self-management of CKD
- Improving Indigenous patient knowledge about treatment options
- Increasing the use of living donor kidney transplantation
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Can-SOLVE CKD priority-setting process
Case Study: The Transplant Ambassador Program
Listening to patient perspectives is at the heart of a new strategy to boost kidney donation.
The Transplant Ambassador Program is a patient-led initiative that will connect past kidney donors and recipients with individuals who are facing a transplant or thinking of donating a kidney. By offering peer mentorship and support, the program is aimed at addressing one of the major barriers to living donation identified by patients.
A 2016 workshop attended by kidney donors, recipients, and family members found lack of education about living donation to be a significant obstacle. Participants agreed that in-person support from trained peer mentors would dispel misinformation and encourage potential donors.
Based on this feedback, Can-SOLVE CKD patient partners Susan McKenzie and Leah Getchell have spearheaded the development of the Transplant Ambassador Program. The program is a component of a Can-SOLVE CKD research project led by Dr. Amit Garg that aims to boost Canada’s stagnant rate of living donor kidney transplantation. This is important, as transplantation offers patients a longer, better life at a fraction of the cost of dialysis.
The Transplant Ambassador Program is scheduled to roll out this fall in 13 regional renal clinics across Ontario. A further 13 clinics will be added in 2019.
Learning
Patient-oriented research is a culture change for all involved. It asks participants from diverse backgrounds to put aside familiar methods and come together with open minds.
There is no simple blueprint. Instead, successful patient engagement depends on team members learning from and with each other to forge partnerships and mutual trust. These partnerships are grounded in a shared commitment to understanding each other’s perspectives, experiences, and needs.
Across the Can-SOLVE CKD Network, we are committed to the principle of co-learning. We are working with our patient partners and team members to develop new methods of research that are culturally appropriate and inclusive of all viewpoints. We are building capacity by delivering patient-oriented research training to all network members. And we are working towards the development of guidelines for Indigenous cultural safety as well as a training curriculum reflecting Indigenous experience. Together, these actions will help us increase awareness of patient-oriented research and mobilize a culture change that will benefit everyone.
Case study: Learning from patient partners
Patient-oriented research isn’t only about listening. It is a commitment to recognizing the value of patients’ unique expertise and learning from these experiences to design better research studies.
"One of the things that's so different about Can-SOLVE CKD, I believe, is that the patients are valued for their opinion and are sought out for their opinion."
Cathy Woods
Co-Chair, Can-SOLVE CKD Patient Council
Co-Chair, Indigenous Peoples' Engagement & Research Council
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For Cathy Woods, becoming a patient partner was an opportunity to use the insight gained from her own journey with kidney disease to make a difference in the health of Indigenous people. In early 2016, Cathy joined a Can-SOLVE CKD project led by Dr. Paul Komenda looking at strategies to improve early diagnosis of kidney disease in Indigenous communities. The initial study design called for a randomized trial in which certain communities would receive screening, triage, and referral to appropriate treatment, while others would receive only education. The creation of “haves” and “have nots” based on the randomized study design was problematic for her. “I’ve never been a fan of randomized trials,” she says. “To me, it always seemed unfair that someone got a placebo and someone got the real stuff.” This imbalance struck home. Cathy’s kidney disease—membranous nephropathy—had been caught by her primary care doctor during a routine physical. Having seen first-hand the benefit of timely diagnosis and referral to care, she thought it should be available to everyone, especially those in remote communities for whom access to primary health care is limited. “People go a long time without realizing that they have kidney disease. I go to northern communities and people talk about things like leg swelling – they just think it’s part of growing old, and I think, ‘Your kidneys aren’t functioning.’ But most of the time, people don’t know because they’re not tested for it.” Cathy raised her concerns with Dr. Komenda and his research team. They were immediately receptive to her perspective and identified a possible solution. Instead of a randomized control trial, they would use a “stepped-wedge” design in which all study participants eventually receive the screen, triage, and treat intervention. The re-designed study is currently in its start-up phase preparing to roll out in BC, Alberta, and Manitoba. Cathy hopes her experience will help other patients recognize that their opinions are valued and that they should not be afraid to speak up. Although she was hesitant at first to discuss her concerns with the project team, the researchers put her at ease and treated her opinion seriously and respectfully. “When we were done, I said to them all, ‘You guys have no idea how intimidating this is to come in and talk about this.’ And Dr. Komenda turned to me and said, ‘Cathy, we learned so much from you.’ “To be spoken about like that and for him to have said that just meant so much to me—that my opinion was valid and that I was an important part of the project.”
Learning to see with two eyes
Through the wisdom and guidance of our patient partners and Indigenous Peoples' Engagement and Research Council, we are learning to incorporate Indigenous ways of knowing and being into our work. We recognize and embrace the importance of a "two-eyed seeing" approach that accounts for both Western and Indigenous perspectives.
With this knowledge, we are developing culturally appropriate research protocols that will support the best possible kidney health for all Canadians, regardless of geography, ethnicity, or culture. As outlined below, our work is aligned with several of the Truth and Reconciliation Commission's calls to action related to health.
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We acknowledge the impact of historical traumas on Indigenous health
In partnership with Diabetes Action Canada, we hosted a webinar on the history of Indigenous health in Canada and how this context impacts health outcomes.
We recognize the disparities in health outcomes between Indigenous and non-Indigenous communities
We are leading research that will promote kidney health in Indigenous communities. This project will help reduce disparities in outcomes by improving access to care for all.
We acknowledge the importance of cultural competency training for research team members, health-care providers, and policy-makers
Our Indigenous partners are leading development of a new training module for Indigenous cultural safety. This curriculum will complement the Foundations in Patient-Oriented Research training developed by a CIHR reference group.
In addition to the above actions, we also uphold the meaningful engagement of Indigenous peoples in our research and outreach activities by:
- acknowledging the traditional territory of the nations where our meetings are held
- acknowledging traditional healing practices of Indigenous peoples, whenever possible
- incorporating traditional practices at our meetings and events (e.g., smudging, Elders' prayers, ceremony, the gifting of tobacco)
- supporting the economic aspirations of Indigenous small businesses (e.g., utilizing Indigenous catering services, hosting meetings at Indigenous venues when possible)
Learning to change the culture together
To help everyone involved in our 18 projects navigate the culture change of patient-oriented research, we have delivered specialized training to network members.
Over the past year, we hosted workshops in Toronto (December 1–2) and Calgary (January 16–17) at which the first two modules of the Foundations in Patient-Oriented Research curriculum were presented to a total of 55 Can-SOLVE CKD network members. The participants who received the training represent a broad cross-section of the network, including patient partners, researchers, policy-makers, and core team members.
With the successful completion of these workshops, nearly 60 percent of the Can-SOLVE CKD Patient Council has participated in training, along with researchers from 17 of our 18 projects.
Over the coming year, our Research Training and Mentorship Committee will develop additional training to build capacity and enhance the capability of partners in patient-oriented research. Our Indigenous Peoples’ Engagement and Research Council is also developing a separate curriculum to build awareness among patients and researchers of Indigenous cultural safety and sensitivity.
55
network members have completed modules 1 and 2 of the Foundations in Patient-Oriented Research curriculum
patient partners
policy-makers
core team members
researchers
20
trainees received patient-oriented research training through the KRESCENT program
post-docs
allied health professionals
new investigators
Leading
Can-SOLVE CKD is Canada’s largest-ever initiative to address chronic kidney disease. We are proud to be leading the way to better kidney health for Canadians in partnership with patients, researchers, policy-makers, and funders.
Over our first year of operations, we have built a foundation that will enable us to achieve an ambitious research program comprising 18 projects across three main themes.
Leading through robust governance
Our governance model brings together the network’s many voices and perspectives to guide all our activities. Central to this model are several councils and committees that place patients and Indigenous peoples in prominent leadership roles. This “patient-first” philosophy ensures that people living with kidney disease are true partners in shaping the network’s direction and activities.
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Research Training &
Mentorship Committee
Pediatrics Committee
Knowledge User &
Translation Committee
Research Operations Committee
Can-SOLVE CKD International
Research Advisory Committee
Steering Committee
Executive Committee
& Core Operations Team
Indigenous Peoples'
Engagement &
Research Council
Patient Council
Research Training & Mentorship Committee
The mandate of this committee is to develop training objectives appropriate for patients, policy-makers, and trainees. It will also discuss recruitment activities, investigate interdisciplinary and KT training opportunities, and monitor the progress, mentorship, and support of all trainees, including patients and health care policy-makers.
Pediatrics Committee
The Pediatrics Committee is mandated to ensure that pediatric nephrology interests are represented across the Can-SOLVE CKD research projects. The committee's initial work is to identify areas of priority for the pediatric community, ensure pediatric representation, facilitate multi-centre pediatric nephrology work, and identify existing funds to leverage potential pediatric nephrology involvement in Can-SOLVE CKD.
Knowledge User & Translation Committee
This committee is crucial to transforming the care and outcomes of patients with CKD and other chronic diseases. The committee's mandate is to oversee the planning, implementation, and uptake of knowledge translation activities, to work with the project leads to create KT strategies, and to provide direct input into research projects to enhance the uptake of evidence.
Research Operations Committee
The Research Operations Committee is mandated to approve research project plans and discuss the scientific progress of research projects. It also considers internal and external collaborations, barriers, challenges, and opportunities.
The ROC will monitor and report on the network's progress via a performance measurement framework and recommend mitigation strategies to the project teams and Steering Committee as necessary.
Can-SOLVE CKD International Research Advisory Committee
This committee provides overall strategic guidance and oversight to the Can-SOLVE CKD Network. It provides an international perspective, identifying opportunities for synergies and collaboration.
The committee is composed of international leaders with varied perspectives and expertise:
- Dr. Neil Boudville
- Dr. Fergus Caskey
- Dr. Jonathan Craig (chair)
- Ms. Tess Harris
- Dr. Hiddo Lambers Heerspink
- Dr. Liz Lightstone
- Dr. Neil Powe
- Dr. Allison Tong
- Dr. Katherine Tuttle
- Dr. Germaine Wong
Steering Committee
The Steering Committee is responsible for the overall strategic leadership and governance of Can-SOLVE CKD. It is co-chaired by Dr. Adeera Levin and Dr. Braden Manns and is ultimately responsible to the boards of the Canadian Society of Nephrology and the Kidney Foundation of Canada.
Executive Committee &
Core Operations Team
The Executive Committee is composed of the co-principal investigators and the network director. With direction from the Steering Committee, it ensures the network's goals and objectives are met according the approved work plans, budgets, and timelines.
The Core Operations Team is led by the network director and is responsible for executing the day-to-day operational activities.
Indigenous Peoples' Engagement & Research Council
IPERC serves to guide the conduct of the network's activities in relation to the unique aspects of patient-oriented research involving First Nations, Inuit, and Métis people. Using an ethical framework that encompasses the principles of ownership, control, access, and possession, IPERC ensures that Can-SOLVE CKD appropriately incorporates, addresses, and respects the needs and perspectives of Indigenous peoples.
Patient Council
The Patient Council is the heart of Can-SOLVE CKD. It is composed of a broad range of patients affected by a representative mix of medical conditions, as well as caregivers, kidney donors, and Indigenous peoples.
The council provides input and guidance on all aspects of Can-SOLVE CKD, from setting priorities to supporting patient engagement in the collection and communication of research evidence.
Leading through partnership
Underpinning everything we do is the generous support of our diverse funding partners. Collectively, our partners have contributed more than $24 million to support our ongoing operations. This represents more than two-thirds of the network’s total funding and significantly increases the scope of what we are able to achieve.
61%
of Can-SOLVE CKD funding is from partner contributions
Our 30+ funding partners include:
- charitable foundations
- health research funding organizations
- universities
- private donors
- pharmaceutical companies
CIHR
Partners
Financial highlights
Fiscal Year 2016/17
Our first year of operations focused primarily on building the foundation for a national research network. In addition to the development of a core operations team and the establishment of network administrative infrastructure, Year 1 saw significant progress towards the launch of 18 research projects.
A necessary step in releasing funds to each of our projects is the completion of formalized funding agreements with host institutions. With most projects having several sources of funds and a mix of cash and in-kind contributions, these agreements were complex. As of March 31, 2017, eight of 10 institutional agreements were completed, enabling the network to begin funding 14 research project and five core infrastructures. This represents a significant milestone and establishes Can-SOLVE CKD as the first SPOR chronic disease network to advance funds to its research projects.
Having built this important foundation, it is expected that actual expenditures on research projects during Year 2 will be in line with planned spending.
Total research budget for 18 projects and 5 core infrastructures
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Partner funding: cash
$40.4M
$17.5M
(43%)
Other CIHR funds
$3.5M
(9%)
CIHR SPOR funding
$12.5M
(31%)
$6.9M
(17%)
Partner funding: in-kind
Diversity in partner funding
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$24.3M in non-CIHR partner funding (cash and in-kind)
$0.8M
(3%)
$6.6M
(27%)
Health research funding organizations and provincial renal programs
Charitable
foundations
Universities & Professional Associations
Private Donors
Pharma companies
$0.66M
(3%)
$1.4M
(6%)
$14.8M
(61%)
Total Planned Spending for Year 1*: $7.1M
$0.9M
$6.2M
Actual Expenditures
Unspent Funds for carry-forward to Year 2
* cash and in-kind from all sources
Year 1 Consolidated Expenses
48%
($0.44M)
21%
($0.18M)
21%
($0.19M)
10%
($0.09M)
Research
Compensation costs of research staff, KRESCENT trainees, and patient partners. Project research activities began in the last quarter of the fiscal year when various agreements and funds were issued.
Management/administration
Compensation costs of core administrative team supporting the projects and day-to-day activities of the network.
Stakeholder engagements
All costs associated with the Can-SOLVE CKD Annual Meeting, workshops and conferences
Supplies, materials & services
Combined costs of supplies, materials, and other services, including communications, website development and maintenance
Research
Management/administration
Stakeholder engagements
Supplies, materials & services
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Year 1 Actual Expenditures vs. Planned Spending
12%
Actual Cash Spending as a
% of Total Planned Cash Spending
22%
Actual In-Kind Expenses as a
% of Total In-Kind Commitment
Actual Cash Spending as a
% of Total Planned Cash Spending
