Can-SOLVE CKD Network

Impact Report 2019/20

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“The past year saw the continued progression of Can-SOLVE CKD Network activities across a wide range of domains. The network’s 18 research projects remain a primary focus, and this year we saw the acceleration of publication activity and the generation of new knowledge about kidney disease and treatment. This year also marked the realization of several new infrastructure and training activities developed through the stewardship of the Can-SOLVE CKD, including KidneyLink, KidneyPro, and the Canadian Nephrology Trials Network. We also saw the ongoing evolution and maturation of patient engagement activities across Can-SOLVE CKD, including the addition of patient partners to a number of new roles that enhanced their visibility and participation nationally and internationally. Finally, this year marked the launch of our sustainability planning activities with a view to developing a collaborative vision for continuation of Can-SOLVE CKD beyond the term of our initial grant.

In this report, we are pleased to highlight activities from our fourth year that are closing gaps in kidney disease knowledge and delivering better health outcomes for patients. Through listening to and learning from the diverse perspectives of our national community, we are leading a cultural shift from care which is disease-centred and provider-focused to care which is patient-centred, informed by evidence, and coordinated across the health care system.

We are excited to share the progress that we have made toward our network’s vision in Year 4. Our collective vision and willingness to act will impact the quality of care of those with kidney disease. To you, and everyone who was engaged in this work, thank you. We are inspired by your generosity and your commitment to ensuring better kidney health for Canadians through patient-oriented research.”

Dr. Adeera Levin, Dr. Braden Manns & Dr. James Scholey
Can-SOLVE CKD Network Leadership Team

Contents

Next section: Putting Patients at the Centre

Putting Patients at the Centre

We incorporate diverse voices and perspectives to ensure that the network addresses and respects the unique needs of all patients.

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Putting Patients at the Centre

Patient engagement is at the heart of Can-SOLVE CKD. Our patient-first policy shapes how we approach our vision, mission, values, goals, and operations.

Patient engagement in Can-SOLVE CKD means active collaboration between patient partners, researchers, and policy makers in all components and projects within the network. We strive to create a culture change in kidney research based on the guiding principles of the SPOR Patient Engagement Framework: inclusiveness, support, mutual respect, and co-building.

“If you take the opportunity that you’re handed by being part of this group, it can lead you to a much greater place.”
– Ken Litchfield, Patient Partner

What we’ve done

Governance

Every committee and working group within the Can-SOLVE CKD has at least two patient partners. Using their lived experience of kidney disease, patients guide the decision-making of all components within the Can-SOLVE CKD Network.

Vision & Values

Patient engagement matters are listed as top priority on any meeting agenda, and patient partners are always asked for their input before others during all meetings.

Research Projects

Individual patient engagement plans have been developed by the 18 research project teams to specify patient partners’ involvement. These patient engagement plans span from “consult” to “collaborate” on the spectrum of engagement as defined by the International Association for Public Participation (IAP2).

Leadership

We strive to create a broad range of roles and opportunities for patient partners based on their interests, experiences, and skills. We have witnessed remarkable growth in the abilities and confidence of patient partners, several of whom have taken on leadership roles throughout the network and in their communities.

What’s new

Over the past year, the network saw the ongoing evolution and maturation of its patient engagement activities, including the addition of patient partners to a number of new roles that enhanced their visibility and participation nationally and internationally.

One of the major patient engagement milestones of the past year was the evolution of the Can-SOLVE CKD Patient Council into a new structure, the Patient Governance Circle (PGC).

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In October 2019, the Patient Governance Circle held its first in-person meeting in Vancouver, serving as a vital step in planning for network sustainability activities.

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This year saw the integration of patient partners into the Canadian Nephrology Trials Network governance structure.

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The Kidney Check project continued its community engagement activities in British Columbia, Alberta, and Manitoba with significant support of Indigenous patient partners.

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Can-SOLVE CKD facilitated the participation of patient partners in a January 2020 workshop hosted by the International Society of Nephrology.

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In the true spirit of patient-oriented research, patient partners have represented Can-SOLVE CKD at regional, national, and international conferences, including the 2019 World Congress of Nephrology.

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Next section: Building Connections

Building Connections

The tools and structures we develop will enhance the volume and quality of kidney research across Canada.

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Building Connections

Can-SOLVE CKD sits at the intersection of many facets of the Canadian kidney health landscape: patient engagement, research, clinical care, and policy.

We have a unique opportunity to catalyze new connections and partnerships that will benefit patient partners and the entire Canadian nephrology community. Can-SOLVE CKD has seized this opportunity to develop new tools and structures designed to bridge gaps, build connections, and enable greater involvement of patient partners in the kidney research. These platforms will increase patients’ involvement in all aspects of the research process by linking them to new studies and educational resources. They will also support researchers to ask and answer the questions that are most important to patients.

Ultimately, we aim to make kidney research in Canada more accessible and effective for everyone, improving the health of Canadians with chronic kidney disease.

What we’ve done

Canadian Nephrology Trials Network

Can-SOLVE CKD has championed the launch of the re-imagined Canadian Nephrology Trials Network (CNTN) to increase the number of kidney-focused randomized controlled trials in Canada.

A 2018 workshop coordinated by Can-SOLVE CKD resulted in a refreshed vision, governance structure, and set of priorities placing increased emphasis on patient partners. Over the past year, that vision and committee structure has been actualized to affirm the CNTN’s role as a valuable asset to Canadian nephrology researchers.

RECORD

RECORD is an online registry of people undergoing treatment for kidney disease in Canada who may be interested in participating in research. RECORD will help match patients with kidney disease to studies they may be able to participate in. RECORD will also help researchers identify important areas of research.

KidneyLink

Can-SOLVE CKD has designed and developed KidneyLink, an online platform to learn about and get involved in research that responds to the needs and perspectives of patients. From a user-friendly website, users may create an account, select topics of greatest interest, and receive up-to-date listings of kidney research opportunities across Canada.

KidneyLink keeps patients informed about new opportunities to get involved and provides access to curated educational resources focused on nephrology research in Canada. KidneyLink will increase patients’ ability to participate in kidney research and will help researchers recruit greater numbers of interested patients for their studies.

What’s new

Over the past year, Can-SOLVE CKD has successfully launched two new platforms, KidneyLink and RECORD, while also furthering the development of the Canadian Nephrology Trials Network (CNTN). These infrastructures will enhance the volume and quality of kidney research across Canada.

After an extended development process that began in spring 2018, the public-facing version of KidneyLink launched in November 2019.

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Over the past year, Can-SOLVE CKD spearheaded the launch of a re-imagined Canadian Nephrology Trials Network, featuring a refreshed vision, governance structure, and set of priorities placing increased emphasis on patient partners.

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RECORD, a new registry for patients undergoing treatment for kidney disease launched in early 2020 with the support of Can-SOLVE CKD.

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Next section: Advancing Knowledge

Advancing Knowledge

Our research projects will close existing gaps in kidney disease knowledge and care to deliver better health outcomes for patients

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Advancing Knowledge

Through our 18 research projects, we are creating new knowledge about kidney health and disease shaped by patient perspectives.

Our research program is based around three themes identified in collaboration with patients, health care providers, and policy-makers.

Together, our research projects will close existing gaps in kidney disease knowledge and care to deliver better health.

Research themes

  • Earlier diagnosis

  • Better treatments

  • Innovative care

“We bring something valuable to the table: we bring our interests and most importantly our lived experience.” – Marian Reich, Patient Partner

What we’ve done

Patient-oriented research in action

We have established a robust national research program based around what matters most to patient partners. 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: identifying kidney disease earlier; defining the best treatments to improve quality of life; delivering innovative patient-centred care.

Robust oversight

The Research Operations Committee (ROC) conducts an annual review of the 18 projects to assess alignment with the objectives of Can-SOLVE CKD and to provide guidance for successful implementation. Aspects that are reviewed include design and methodology, feasibility of implementation plan, risk mitigation strategies, relevance of outputs to Can-SOLVE CKD outcomes, and patient engagement.

What’s new

Over 100 patients with glomerulonephritis, a rare form of kidney disease, have been enrolled in the Canadian Glomerulonephritis Registry. This project has also encouraged many new investigators to focus their attention on glomerulonephritis research, building a pan-Canadian team towards the cause.

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Utilizing a model of point-of-care testing developed in Manitoba by First Nations health-care providers, Kidney Check is seeing the model expanded and adapted across Canada.

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In partnership with the Canadian Primary Care Sentinel Surveillance Network, a Can-SOLVE CKD research team is coordinating a large-scale study to evaluate the Kidney Failure Risk Equation in clinics across Alberta and Manitoba.

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A Can-SOLVE CKD project is leading focus groups with Indigenous people in Saskatchewan to create a more diverse perspective on what information is necessary for individuals to make informed decisions about their kidney health.

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The Triple I team is preparing to explore and test several short- and long-term solutions that address the top ten challenges facing patients on hemodialysis.

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A new study by Can-SOLVE CKD researchers and patient partners has identified indicators that may be used to monitor and improve the performance of transplant centers in how efficiently they evaluate individuals interested in becoming living kidney donors.

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A range of physical, psychological and social factors have the potential to influence the trajectory of a person’s disease during this important stage of life, including the progression of secondary complications such as kidney disease. Two studies through Can-SOLVE CKD are striving to tease apart these factors and identify possible ways to limit the development of diabetes-associated kidney disease.

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It well known that consuming too much salt can be harmful for people living with impaired kidney function. But less is known about the impacts of high salt intake on treatment options. Over the past few years, however, a Can-SOLVE CKD research group has been uncovering important clues.

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Symptoms of kidney disease can negatively impact patients’ quality of life, and so it is unsurprising that many kidney patients have identified symptom management as a research priority. Several Can-SOLVE CKD research projects are exploring new ways of treating the symptoms of kidney disease, including one project focused on restless leg syndrome (RLS).

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New Publications in 2019/20

Title Journal Authors Research Project
Peptidomic Analysis of Urine from Youths with Early Type 1 Diabetes Reveals Novel Bioactivity of Uromodulin Peptides In Vitro Molecular & Cellular Proteomics Van JAD, Clotet-Freixas S, Zhou J, et al. AdDIT
Renal Hemodynamic Function and RAAS Activation Over the Natural History of Type 1 Diabetes American Journal of Kidney Diseases Lytvyn Y, Bjornstad P, Lovshin JA, et al. AdDIT
Association between uric acid, renal haemodynamics and arterial stiffness over the natural history of type 1 diabetes Diabetes, Obesity & Metabolism Lytvyn Y, Bjornstad P, Lovshin JA, et al. AdDIT
Foam Sclerotherapy for Cyst Volume Reduction in Autosomal Dominant Polycystic Kidney Disease: A Prospective Cohort Study Kidney Medicine Iliuta IA, Shi B, Pourafkari M, et al. ADPKD
Intrafamilial Variability of ADPKD Kidney International Reports Lanktree MB, Guiard E, et al. ADPKD
Prognostic Performance of Kidney Volume Measurement for Polycystic Kidney Disease: A Comparative Study of Ellipsoid vs. Manual Segmentation Scientific Reports Shi B, Akbari P, Pourafkari M, et al. ADPKD
Salsalate, but not metformin or canagliflozin, slows kidney cyst growth in an adult-onset mouse model of polycystic kidney disease EBioMedicine Leonhard WN, Song X, Kanhai AA, et al. ADPKD
Estimating Glomerular Filtration Rate in Youth with Obesity and type 2 diabetes; the iCARE Study Equation Pediatric Nephrology Dart A, McGavock J, Sharma A, et al. iCARE
A Holistic Approach to Risk for Early Kidney Injury in Indigenous Youth with Type 2 Diabetes; A Proof of Concept Paper from the iCARE Cohort. Canadian Journal of Kidney Health and Disease Dart A, Wicklow, B, Blydt‐Hansen T, et al. iCARE
An evaluation of renin-angiotensin system markers in youth with type 2 diabetes and associations with renal outcomes Canadian Journal of Diabetes Dart A, Wicklow B, Scholey J, et al. iCARE
Cardiac structure and function in youth with type 2 diabetes in the iCARE cohort study: Cross-sectional associations with prenatal exposure to diabetes and metabolomic profiles Pediatric Diabetes Guillemette L, Dart A, Wicklow B, et al. iCARE
Altered DNA Methylation and Serum Levels of Metabolites is Associated With Type 2 Diabetes in Adolescents Canadian Journal of Diabetes Agarwal P, Dart A, Wicklow B, et al iCARE
Integrating risk-based care for patients with chronic kidney disease in the community Canadian Journal of Kidney Health and Disease Harasemiw O, Drummond N, Singer A, et al. KFRE
Preferences for a self-management e-health tool for patients with chronic kidney disease: results of a patient-oriented consensus workshop CMAJ Open Donald M, Beanlands H, Straus S, et al. Self-management
Identifying Needs for Self-management Interventions for Adults With CKD and Their Caregivers: A Qualitative Study American Journal of Kidney Diseases Donald, M et al. Self-management
Understanding Adults With Chronic Kidney Disease and Their Caregivers’ Self-Management Experiences: A Qualitative Study Using the Theoretical Domains Framework Canadian Journal of Kidney Health and Disease Baay S, Hemmelgarn B, Tam-Tham H, et al. Self-management
Content and quality of websites for patients with chronic kidney disease: An environmental scan Canadian Journal of Kidney Health and Disease Smekal M, Gil S, Donald M, et al. Self-management
Next section: Educating the Community

Educating the Community

We are developing a new training curriculum to enhance knowledge and skills for patient-oriented kidney research in Canada

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Educating the Community

Patient-oriented research is a culture change that asks all involved to push beyond what is familiar and embrace new ways of working.

To help network members advance their skills and knowledge in patient-oriented research, the Can-SOLVE CKD Training & Mentorship Committee is creating a suite of training programs focused on the network’s core activities.

What we’ve done

Foundational training

Can-SOLVE CKD has delivered the Foundations in Patient-Oriented Research curriculum patient-oriented research training to a wide range of stakeholders. This program aims to build partnerships between researchers and patients that are based on inclusiveness and mutual respect. Can-SOLVE CKD has previously offered all three modules to network members at training sessions across Canada. To date, more than 90 network members have been trained.

A new curriculum for the kidney community

The Can-SOLVE CKD Research Training and Mentorship Committee administered a survey to network members in summer 2017 to determine the greatest training needs. The survey revealed five gaps remaining for network members after the initial Foundations training. The TMC then set about collaboratively developing five programs corresponding to each gap, which are referred to as “learning branches.”

Can-SOLVE CKD Learning Branches

Patient Engagement Toolkit

Patient Engagement Toolkit

As patients and researchers began to work together more and more, there was a need for practical tools to support these collaborations. Therefore, the TMC created the Patient Engagement Toolkit, which helps research teams communicate, identify common goals, and define roles for patients. The toolkit includes tips for collaboration in patient engagement, a glossary of terms, and practical tools to support the internal functioning of teams, such as a skills and contributions chart.

Telling Stories with Impact

Telling Stories with Impact

All patients and their family members have important stories that capture the emotions and real-life experiences of what is like to live with kidney disease and receive care. Sharing these stories with research teams and others is a helpful strategy for fostering better appreciation and understanding of what it is like to live with kidney disease. Through an eight-week course, this program helps patient partners learn how to craft and share their health care stories in an impactful way. Participants taking this module learn how to organize their story by writing about two moments in care that they wish to share, along with a call to action for improving kidney care.

KidneyPro: Promoting Kidney Research in Canada

KidneyPro: Promoting Kidney Research in Canada

This module was created to help patients better understand the research process and landscape in Canada, with the goal of helping them participate more meaningfully throughout all stages of research. KidneyPro, along with providing a general overview of kidney research in Canada, helps participants familiarize themselves with the roles that patient partners can play in research. KidneyPro is also available in French.

Wabishki Bizhiko Skaanj Learning Pathway

Wabishki Bizhiko Skaanj Learning Pathway

A unique and important branch of the modules is the Indigenous cultural safety learning pathway, named Wabishki Bizhiko Skaanj (pronounced wah-bish-kih biish-ih-goo skaa-nch) which means “White Horse” in Anishinaabemowin. This branch aims to enhance researchers’ knowledge and awareness of racial biases, Indigenous voices and stories, the impact of colonization on Indigenous health, and promote cultural safety. “We have been researched to death. But it is our responsibility to research ourselves back to life,” says Helen Robinson-Settee, an Indigenous TMC member who helped develop Wabishki Bizhiko Skaanj.

Knowledge Translation Community of Practice

Knowledge Translation Community of Practice

This branch is dedicated to enhancing the understanding and importance of knowledge translation (KT). KT involves creating and applying knowledge in ways that maximize the effectiveness of health services and products. A group of researchers and patient partners convene on a regular basis, as part of the KT community of practice, to help translate the valuable knowledge created by the network into real-world settings. This is accomplished through the group’s meetings, presentations and other forms of communication.

What’s new

The Can-SOLVE CKD Training & Mentorship Committee made significant progress this year in its work to develop new training resources to advance patient-oriented kidney research.

KidneyPro is a new tool developed by Can-SOLVE CKD for educating patients and the public about the foundational aspects of health research, specifically kidney health research, in Canada.

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The Patient Engagement Toolkit, which help research teams communicate, identify common goals, and define roles for patients.

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“Telling Stories for Impact” is a six-week online workshop to help network members gain the skills and confidence to share their stories in a health care setting.

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Knowledge Keepers, also known as Elders, are people in Indigenous communities who hold valuable knowledge about their culture and ways of being. Can-SOLVE CKD is working with Knowledge Keepers to apply this valuable way of knowing, being and healing within the network, and beyond.

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The Knowledge Translation Community of Practice has provided network members, especially staff, coordinators and patient partners regular learning opportunities via Zoom to enhance KT literacy and practical KT skills.

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Next section: Research through an Indigenous Lens

Research through an Indigenous Lens

We are committed to fostering an understanding of the histories and cultures of Indigenous peoples as a foundation for respectful partnerships

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Research through an Indigenous Lens

In partnership with our Indigenous Peoples’ Engagement and Research Council (IPERC), we strive to ensure Indigenous knowledge and perspectives are reflected across our research projects and governance.

We are fostering respectful partnerships built on an understanding of the histories and cultures of Indigenous peoples. Over the past year, we have undertaken many activities that have supported researchers and patient partners to become more aware of racial biases, Indigenous voices and stories, the impact of colonization on Indigenous health, and culturally safe health research practices.

“It’s really about understanding who we are as Indigenous peoples and helping people to understand those histories, those contemporary lifestyles, our languages, so that they can make informed decisions.” – Helen Robinson-Settee, Co-Chair, Indigenous Peoples’ Engagement and Research Council

What we’ve done

Indigenous ways of knowing

Through the wisdom and guidance of Indigenous patient partners, Knowledge Keepers, community leaders, academics, and health care providers, we are learning to incorporate Indigenous ways of knowing into health research. With this knowledge, our four Indigenous-focused projects have developed culturally appropriate research protocols that promote better kidney health for Indigenous communities and individuals.

Indigenous governance

The Indigenous Peoples’ Engagement and Research Council (IPERC) was established early in the inception of Can-SOLVE CKD, and continues to play a valuable role in providing governance and oversight within the network. IPERC exists to ensure Indigenous voices are heard and to guide research priorities that affect Indigenous communities and individuals with kidney disease.

To support this mission, each IPERC member plays an active role in overseeing one or more of the network’s research projects, as well as the development of training materials and other initiatives.

Indigenous methodologies

Storytelling is a valuable method used to share patient experiences within the network, and numerous Indigenous patient partners have shared their experiences through the Telling Stories for Impact module. Their stories highlight calls to action and aim to increase awareness of patient-oriented priorities.

Another methodology involves teachings from Knowledge Keepers, as part of the Wabishki Bizhiko Skaanj Learning Pathway. This initiative involved a gathering of Knowledge Keepers from diverse First Nations to share knowledge and develop a narrative. Tobacco and other offerings were gifted to the Knowledge Keepers for their participation and sharing of knowledge at the gathering. In addition, the network’s operations team undertook a one-day training session with Elder Lillian Daniels in October 2019 to learn about the medicine wheel and other Indigenous practices related to health.

Ceremony

Can-SOLVE CKD has adopted Territory Acknowledgements to open all virtual and in-person meetings. This is done to recognize the numerous and distinct First Nations across Canada and acknowledge their traditional stewardship over the land.

Lastly, a variety of ceremonies have been included in the network’s activities, guided by IPERC members. Examples include: the IPERC meeting Sharing Circle, a Sweat Lodge ceremony at the 2019 Can-SOLVE CKD Annual Meeting in Montreal, and the annual honouring of the Wabishki Bizhiko Skaanj Learning Pathway name at the Sundance Ceremony in Manitoba.

These Indigenous ceremonies enhance knowledge translation and Indigenous health and wellness. Importantly, these ceremonies are also training opportunities for network members to engage in Indigenous ways of doing, knowing and being.

What’s new

In October 2019, the network hosted a gathering with Knowledge Keepers from across Canada.

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The successful initiation of screening activities by the Kidney Check project in British Columbia this year was made possible by strong engagement and partnership with First Nations communities and a wide range of project stakeholders.

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A key outcome of this year was the continued development of Wabishki Bizhiko Skaanj, a novel learning pathway that promotes respectful, culturally safe partnerships between researchers and Indigenous peoples.

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This year saw the continued growth of the Indigenous Peoples’ Engagement and Research Council (IPERC).

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Can-SOLVE CKD Network members attended a Sundance ceremony near Gull Lake, Manitoba, to renew the network’s commitment to honouring the name of the Wabishki Bizhiko Skaanj Learning Pathway.

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Next section: Looking to the Future

Looking to the Future

Entering the network’s fifth year of operations, sustainability planning will be a major point of focus.

Can-SOLVE CKD hosted half-day virtual workshops in June 2020 and October 2020 to kick off the sustainability planning process. Additional workshops are planned for 2021, along with the creation of a writing committee to develop potential workplans and grant submissions related to the network’s next phase. Sustainability planning will also include a focus on updating project budgets to align with the network’s newly extended end-of-grant date of March 2023.

Network members will continue to learn how to work successfully in a virtual environment as we adapt to the COVID-19 pandemic, and we will continue to support research projects as they work to maintain productivity amid research curtailment policies. The network will continue the rollout and implementation of its novel curriculum activities, including the Wabishki Bizhiko Skaanj Learning Pathway. Finally, we will look to increase publication activity across all 18 projects, including the development of project-specific protocol papers.

Financial highlights

Year 4 saw most of the network’s research projects in an active phase of implementation, with significant progress made in aligning actual expenditures with planned spending.

Over the reporting period, the network’s total spend was 102% of planned spending ($6,486,966 against a 2019/20 budget of $6,331,503, not including carry-over from previous years). This represents a marked increase on the previous fiscal year (2018/19) during which actual spending was 73% of planned spending ($5,201,077 against a budget of $7,147,976).

The network has succeeded in increasing the proportion of budgeted funds spent during the current reporting period; however, a significant underspend remains as a result of delays in executing institutional agreements and other start-up activities. Indeed, our total carry-over from Years 1 to 4 is $13,762,740 (cash and in-kind). We anticipate further catch-up in spending as network activities progress over the remaining period of the grant, which was recently extended to March 31, 2023.

Note: Year 1 is FY 2016/17, Year 2 is FY 2017/18, Year 3 is FY 2018/19, and Year 4 is 2019/20.

Budgeted Spending for Year 4

Budget for Year 4 (excluding carry-over): $6,331,503

$6,486,966
Actual expenditures

Year 4 Actual Expenditures vs. Planned Spending

% of Total Actual Spending over Total Planned Spending

102%

% of Actual Cash Spending over Planned Cash Spending

115%

% of Actual In-Kind Support over In-Kind Commitment

59%

Year 4 Total Spending vs. Accumulated Budget* by Research Project

*Sum of Years 1-3 unspent funds and Year 4 budget

Theme 1: Earlier diagnosis

Theme 2: Better treatments

Theme 3: Innovative care

Year 4 Actual Network-Wide Spending (Cash and In-Kind) by Category

Research
.

Research staff, trainees, contractors, and patient partners’ honoraria

Supplies, Materials & Services

Combined costs of equipment and information technology, supplies, educational materials and services

Stakeholder Engagements

All costs associated with the Can-SOLVE CKD Annual Meeting, workshops, conferences, and governance

Management & Administration

Compensation costs of administrative team supporting the projects and day-to-day activities of the network

Total Research Budget for 18 Projects and 5 Core Infrastructures

Can-SOLVE CKD Partner Funding by Category

Hover over graph for more info

Thank you!

Together we will transform kidney health for all Canadians

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Contact

Heather Harris
Executive Director
778-235-2528
hharris@cansolveckd.ca