Can-SOLVE CKD Network

2021 Impact Report

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2021 marked the fifth anniversary of Can-SOLVE CKD, and it was a time of reflection, celebration, and looking forward to the future.

As we look back on the year’s achievements in this report, our 18 research projects have generated new knowledge that will improve the health of Canadians affected by kidney disease. We have advanced Indigenous cultural safety in research and created resources to support respectful partnerships. We have developed key tools and infrastructure that will enhance the way kidney research is conducted in Canada. Most of all, we have advanced a culture change in research that has placed patients and their experiences at the forefront.

None of this would have been possible without the collective efforts of hundreds across Canada – our volunteer patient partners, Knowledge Keepers, research team members, investigators, and Operations Team. Special thanks are due to our funding partners for their generous contributions to our network. We sincerely thank everyone who has played a role and look forward to celebrating our shared achievements with you in the near future.

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

Contents

Next section: Changing the Culture of Research

Changing the Culture of Research

We are fostering respectful, meaningful participation of patients at all stages of the research process

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Changing the Culture of Research

Patient-oriented research depends on everyone pushing beyond what is familiar and embracing new ways of working.

For Can-SOLVE CKD, this means active collaboration between patient partners, researchers, and policy-makers in all network projects and activities. 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.

Meaningful relationships between patient partners and researchers have led to presentations at professional meetings, co-authorship of publications, and inclusion in planning committees for local and international meetings. Patients’ participation in peer-review and evaluation has enhanced project relevance, and their ongoing input will support the implementation and sustainability of research activities. This strong foundation, built over the last five years, is the springboard for an ongoing transformation of kidney research to optimize patient care and improve outcomes.

“Can-SOLVE CKD has given me my voice. IPERC has given me my voice. And I think that people really need to tell their stories and really need to feel that they’re being heard.”

Cathy Woods
Co-Chair, Patient Governance Circle
Member, Indigenous Peoples’ Engagement and Research Council

2021 highlights

National Patient Network

This new network connects “research-curious” patients with emerging research opportunities, peer mentorship, and educational resources. The goal is to support increased involvement of patients in kidney health research.

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Core Values Statement

We have a shared commitment to advancing equitable, patient-oriented research of the highest quality through our core values of inclusion, cultural competency, and collaboration.

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Knowledge Keepers in Research Guidebook

This novel resource was created to share reflections on bringing traditional Indigenous knowledge into health research.

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Land Acknowledgment Learning Series

This four-part series called “Supporting Each Other’s Journey” was created in response to the need for additional teachings on land acknowledgment, pronunciation and the history of Indigenous land/territories.

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By the numbers

0
Patient Governance Circle members
0
IPERC members
0
patient partners on research projects
0%
of Can-SOLVE CKD publications since 2016 include patients as co-authors
0%
of Can-SOLVE CKD publications since 2020 include patients as co-authors
Next section: Generating New Knowledge

Generating New 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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Generating New Knowledge

Through our 18 research projects, we are addressing the top kidney health priorities identified by patients.

Our research teams have produced impressive outputs during the network’s first phase. These include several initiatives that have rolled out on a provincial scale (e.g., improving living kidney donation; new self-management tools; use of patient-reported outcome measures) in addition to a significant record of peer-reviewed articles and presentations at local, national, and international meetings.

Patients have been central to these accomplishments. One of our greatest impacts has been to create a system by which research is conceived and implemented with the full participation of all. 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

“It’s changed the way that I do research. Through Can-SOLVE CKD, I’ve come to appreciate that really focusing on the priorities of patients is the optimal way to do research.”

Dr. Brenda Hemmelgarn
Dean, Faculty of Medicine and Dentistry, University of Alberta
Can-SOLVE CKD Project Lead (Strategies to improve patient self-management of CKD)

Generating New Knowledge

Reducing patients’ pill burden

The STOP Med-HD team has developed deprescribing algorithms to help reduce the number of medications taken by hemodialysis patients.

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Supporting CKD in self-management

A Can-SOLVE CKD team completed the development and launch of a new online resource called My Kidneys My Health for supporting patients to self-manage their kidney health. 

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Reducing heart disease in dialysis patients

The ACHIEVE trial is a large international study to determine if spironolactone reduces heart-related deaths in patients with kidney failure.

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Kidney health screening in Indigenous communities

COVID-19 disrupted the Kidney Check program, prompting the project team to find new ways this year of partnering with First Nations communities to continue kidney screening.

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By the numbers

0
researchers (includes co-investigators and trainees)
0
new publications in 2021
0
peer-reviewed publications since 2016
0
citations (of December 2021)

New Publications in 2021

Title Journal Authors Research Project
A Web-Based Self-Management Support Prototype for Adults With Chronic Kidney Disease JMIR Formative Research Donald M, Beanlands H, Straus SE et al. Self-Management
The Kidney Check program – championing patient-centered, culturally safe, preventive kidney care in Canada’s rural and remote Indigenous communities Journal of the International Federation of Clinical Chemistry and Laboratory Medicine Curtis S, Collister D, Martin H, et al. Kidney Check
Kidney Check Point-of-Care Testing—Furthering Patient Engagement and Patient-Centered Care in Canada’s Rural and Remote Indigenous Communities: Program Report Canadian Journal of Kidney Health and Disease Curtis S, Martin H, DiNella M, et al. Kidney Check
Defining the Scope of Knowledge Translation Within a National, Patient-Oriented Kidney Research Network Canadian Journal of Kidney Health and Disease Elliott MJ, Allu S, Beaucage M, et al. Knowledge User/Knowledge Translation Committee
Wabishki Bizhiko Skaanj: a learning pathway to foster better Indigenous cultural competence in Canadian health research Canadian Journal of Public Health Robinson-Settee H, Settee C, King M, et al. Wabishki Bizhiko Skaanj Learning Pathway
Re-Envisioning the Canadian Nephrology Trials Network: A Can-SOLVE-CKD Stakeholder Meeting of Patient Partners and Researchers Canadian Journal of Kidney Health and Disease Murdoch A, Tennankore KK, Bohm C, et al. Canadian Nephrology Trials Network
Treatment Preferences for Cardiac Procedures of Patients With Chronic Kidney Disease in Acute Coronary Syndrome: Design and Pilot Testing of a Discrete Choice Experiment Canadian Journal of Kidney Health and Disease Wilson T, Javaheri P, Finlay J, et al. APPROACH
Comparison of Clinical and Social Characteristics of Canadian Youth Living with Type 2 and Type 1 Diabetes Canadian Journal of Diabetes Carino M, Elia Y, Sellers E, et al. AdDIT
Cardiovascular comorbidity associated with albuminuria in youth onset type 2 diabetes: analysis from the iCARE study Canadian Journal of Diabetes Sellers EAC, Dart AB, McGavock J, et al. iCARE
Impact of a screen, triage and treat program for identifying chronic disease risk in Indigenous children. Canadian Medical Association Journal Frejuk KL, Harasemiw O, Komenda P, et al. Kidney Check
Development of a patient-reported outcome measure for the assessment of symptom burden in pediatric chronic kidney disease (PRO-Kid). Pediatric Nephrology Jawa NA, Rapoport A, Widger K, et al. Pediatric Committee
Evaluation of novel glomerular filtration rate estimation equations in adolescents and young adults with type 1 diabetes Journal of Diabetes and its Complications Gaebe K, White CA, Mahmud FH, et al AdDIT
Impact of point-of-care screening for hypertension, diabetes and progression of chronic kidney disease in rural Manitoba Indigenous communities Canadian Medical Association Journal Harasemiw O, Ferguson T, Lavallee B, et al. Kidney Check
Coming full circle: patient and physician reunite in kidney research network Canadian Medical Association Journal Collister D, Desjarlais A
Three week compared to seven week run-in period length and the assessment of pre-randomization adherence: A study within a trial Contemporary Clinical Trials Collister D, Mbuagbaw L, Guyatt G, et al. ACHIEVE
Tissue Sodium Storage in Patients With Heart Failure: A New Therapeutic Target? Circulation: Cardiovascular Imaging Lemoine S, Salerno FR, Akbari A, et al. NaMRI
Burden of mental health symptoms and perceptions of their management in in-centre hemodialysis care: a mixed methods study Journal of Patient-Reported Outcomes Schick-Makaroff K, Wozniak LA, Short H, et al. EMPATHY
Patient-reported outcome measures in the care of in-centre hemodialysis patients Journal of Patient-Reported Outcomes Davison SN, Klarenbach S, Manns B, et al. EMPATHY
Mapping the Edmonton Symptom Assessment System-Revised: Renal to the EQ-5D-5L in patients with chronic kidney disease Quality of Life Research Wen J, Jin X, Al Sayah F, et al. EMPATHY
Patient, Caregiver, and Provider Perspectives on Improving Information Delivery in Hemodialysis: A Qualitative Study Canadian Journal of Kidney Health and Disease Ferreira da Silva P, Talson MD, Finlay J, et al. Triple I
Voicing Individual Concerns for Engagement in Hemodialysis (VOICE-HD): A Mixed Method, Randomized Pilot Trial of Digital Health in Dialysis Care Delivery Canadian Journal of Kidney Health and Disease Thompson S, Schick-Makaroff K, Bello A, et al. Triple I
Next section: Building Capacity for Innovation

Building Capacity for Innovation

We are strengthening the kidney research environment in Canada by creating new tools, infrastructure, and training.

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Building Capacity for Innovation

Can-SOLVE CKD is uniquely placed to take a leadership role in enhancing Canada’s capacity for innovative kidney research.

We have undertaken the development of several new resources designed to bridge gaps in Canadian nephrology research and facilitate greater involvement of patient partners in the research enterprise. These tools will increase participation in research, enable robust clinical trials, and increase the skills and knowledge of all who take part in patient-oriented research.

2021 highlights

Canadian Nephrology Trials Network

This national network is working to increase the number of kidney-focused randomized controlled trials in Canada.

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Partnering with industry

Recognizing the need for transparent engagement of pharmaceutical industry partners in nephrology research, Can-SOLVE CKD developed a guidance document to outline requirements. 

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Learning branches

To help network members advance their skills and knowledge in patient-oriented research, the Can-SOLVE CKD Training and Mentorship Committee is developing a respectful, relevant, relational, and reciprocal training curriculum.

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Implementation Toolkit

The network has developed an Implementation Toolkit to better support project teams as they plan to scale, spread, or implement their evidence. 

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KidneyLink

Can-SOLVE CKD continues to support and enhance the KidneyLink portal, which connects patients to research opportunities. 

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By the numbers

0
research trials reviewed by CNTN
0
KidneyLink members as of December 2021
0
visitors to KidneyPro in 2021
Next section: Looking Forward

Looking Forward

2021 marked an important transitional year for Can-SOLVE CKD.

While our research projects and infrastructure programs continued to advance patient-oriented kidney research, detailed plans for the network’s second phase were developed. In August, the Canadian Institutes of Health Research (CIHR) announced a brand new funding opportunity for SPOR Chronic Disease Networks, including Can-SOLVE CKD. This second phase will focus on knowledge mobilization and implementation science, presenting a unique opportunity to translate research outputs into policy and practice that will benefit all Canadians living with or affected by kidney disease.

In responding to the CIHR opportunity, we worked with our Sustainability Planning Committee, consisting of 13 patient partners in addition to academic researchers, clinician scientists, nephrologists, Indigenous Elders, policy-makers, and network staff. This strong base of knowledge and experience informed the creation of a vision for Phase 2 activities and a detailed grant application. 

Building on the learnings of our first five years, Phase 2 will focus on:

  • Conducting implementation science projects to mobilize, sustain, and scale up interventions
  • Advancing Indigenous cultural competency
  • Diversifying the kidney research environment to address EDI principles
  • Supporting capacity building and partnerships for sustainable patient-oriented research

Financial highlights

Budgeted Spending for Year 5

Budget for Year 5 (excluding carry-over): $9,438,361

$4,864,139
Actual expenditures

Year 5 Actual Expenditures vs. Planned Spending

% of Total Actual Spending over Total Planned Spending

50%

% of Actual Cash Spending over Planned Cash Spending

47%

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

97%

Year 5 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

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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