Ontario Renal Plan 3 2019–2023
The release of the third Ontario Renal Plan coincides with the Ontario Renal Network’s tenth anniversary. Over the past decade, there have been significant improvements in the way kidney care services are delivered and managed in the province. This plan builds on that progress and will continue under Ontario Health.
Ontario Health is a single agency that will, in time, take on the Ontario Renal Network’s work as part of Ontario Health’s larger mandate to oversee healthcare delivery in Ontario, improve clinical guidance and support providers to ensure better quality care for patients.
Working together, we[*] will achieve our common goal to create a system that delivers person-centred, safe and effective kidney care services in an efficient, equitable and timely manner.
I am very grateful to everyone who shared their expertise and insights in the development of this plan. Together, we set goals and objectives that will guide our work by driving innovation, improving communication and fostering person-centred care. And together, we will bring this plan to life. In doing so, we will continue to deliver meaningful improvements in care for people affected by chronic kidney disease.”
Vice-President, Ontario Renal Network
Nephrologists, other healthcare professionals, patients and caregivers were widely consulted throughout the development of this plan. All will be pleased to see the Ontario Renal Network’s continued focus on facilitating access to transplant, dialysis of all types, palliative care, and specialized clinics for glomerulonephritis and for women with renal disease requiring maternal healthcare. Our commitment to address renal patients’ mental health is a challenging but important addition to the plan.”
Dr. Peter Blake
Provincial Medical Director, Ontario Renal Network
This Ontario Renal Plan marks the continued evolution of person-centered care. Throughout the development of this plan, patients were at the forefront of discussions of the overarching principles, goals and strategic objectives. As they continue to take centre stage during the creation of future initiatives, patients and their families will experience a smoother path along their kidney care journey.”
Co-Chair of Ontario Renal Plan Steering Committee
Goals & Strategic Objectives
Partner with patients and caregivers to strengthen an inclusive kidney care system
In describing “excellent care,” patients with chronic kidney disease and their caregivers[*] consistently emphasize their relationships with healthcare professionals who see them as people and as respected and equal partners in their care.
A person-centred model of care relies on effective and compassionate communication – between patients, caregivers and healthcare professionals.
Conversations about all aspects of care should begin early and continue through all stages of the patient journey. These conversations should cover goals of care and symptoms that can significantly impact the patient’s quality of life. Shared decision-making between patients, their caregivers and their care team ensures treatment aligns with a patient’s preferences, family situation, culture and lifestyle.
Patients who may benefit from a palliative approach to care should be identified as early as possible. This approach to palliative care will align with the recommendations of the Ontario Palliative Care Network, and address the unique and complex challenges of people with advanced kidney disease.
Working towards this goal means partnering with patients and their caregivers to improve their experience of care and quality of life. Patients who want to take an active role in their care will have the support, confidence and opportunity to do so.
We[*] will also explore and support innovative ways to address the significant emotional and mental health burden that chronic kidney disease can place on both patients and caregivers.
- Foster a kidney care system that supports patients’ mental health
- Enhance the quality of communication among patients, caregivers and healthcare professionals along the entire kidney care journey
- Expand the use of patient-reported experiences and outcomes to drive improvements
- Promote and enable dialysis at home
- Strengthen early identification and support for patients who would benefit from a palliative approach to care
“I have discovered that I am one of the most important members of my care team. I feel so much better in my mind and body since taking an active role in my health: self-cannulating, eating well, exercising and learning about my body’s unique abilities and requirements. However, despite having an incredible healthcare team, I always had to be the one to ask for help.”
Nate B. has been receiving in-facility hemodialysis since his kidneys failed in 2014 when he was 22. He completed a college program in educational support in 2018 and hopes to continue his studies.
Empower patients, caregivers and healthcare professionals to reduce avoidable harm
Multiple medications are often required for patients to manage both their kidney function and other health conditions. While these medications have the potential to greatly improve the lives of people living with kidney disease, they can present challenges as well.
It is important for people with chronic kidney disease to be especially careful about which medications they take and how they take them. Their healthcare professionals must help make sure they avoid types or doses of drugs that might harm the kidneys or interact with medications for other health conditions.
We[*] will partner with patients and healthcare professionals to build awareness across the healthcare system about medication safety. Specialized education for healthcare professionals will focus on awareness of medications and dosages that can potentially harm people with chronic kidney disease or impaired kidney function
People on dialysis are also subject to infections like peritonitis and catheter-related bacteremia, depending on their type of dialysis access. We will continue to monitor these infection rates in Ontario and compare them, where possible, to nationally and internationally benchmarked data.
- Drive improvements in medication management
“I take 35 pills a day for my diabetes, high blood pressure and transplanted kidney. If I get sick, it can get very tricky because other doctors might not know that some drugs can hurt my kidney or interfere with my other meds. I was hospitalized for pneumonia and they gave me 2 antibiotics that caused my creatinine level to rise. As soon as I was discharged, I went to my renal clinic and they told me to stop the antibiotics right away.”
Harry J. was diagnosed with chronic kidney disease in 2008 and received a kidney transplant in 2015.
Enable responsive and respectful kidney care for patients, regardless of who they are or where they live
Everyone in Ontario should have the ability to access the services they need and should not be disadvantaged because of who they are, where they live or what resources they have.
Yet some Ontarians can face geographical, financial and cultural barriers to accessing and receiving kidney care services. These barriers may negatively affect patients’ care experience, treatment decisions and outcomes.
People living in rural or remote areas of the province may have to travel long distances to receive in-facility dialysis or training for home dialysis. Some patients may not be able to dialyze at home or in their home communities because of the barriers related to out-of-pocket expenses for travel and accommodation. Other barriers to care may include lack of social supports and healthcare professionals’ biases.
First Nations, Inuit, Métis and urban Indigenous people are more likely to live with chronic kidney disease than people in the general population, and face significant challenges in accessing the care in a way that is culturally safe.
We[*] will embed cultural safety principles in our work. People who experience culturally safe healthcare are more likely to access care earlier and to feel more involved and empowered.
We will work with our network and use data so that strategies and policy advice support reduced barriers to equitable care for underserved populations.
- Develop a strategy in partnership with First Nations, Inuit, Métis and urban Indigenous people to improve their kidney care
- Reduce barriers to accessing services for people with health inequities, including in rural and remote locations
“The relationships being built with First Nations, Inuit and Métis communities and the Ontario Renal Network are really important. It takes a long time and a lot of work to develop trust and create a base for cultural safety. Listening to our stories is a big part of that. Eventually, I would like to see more Indigenous healthcare professionals providing kidney care, so that our people could learn from each other.”
Mary B. is Anishnaabekwe from Nipissing First Nation outside of North Bay. She received a transplanted kidney from her cousin in 2015.
Improve the efficiency and coordination of the kidney care system
An efficient system is one in which patients and their caregivers are partners in a well-organized multidisciplinary care team. As they see various healthcare professionals in multiple care settings, they are able to transition seamlessly throughout their care journey. We[*] will work with the Regional Renal Programs and partners in primary, home and community care to improve communication and coordination of care.
We enable more coordinated and integrated care through the Chronic Kidney Disease Quality-Based Procedure. This funding and accountability provides the network of Regional Renal Programs, the Local Health Integration Networks (which, in time, will transition to Ontario Health and Ontario Health Teams), and long-term care homes with the funding to support patients in multiple care settings, including in hospitals and at home. This one source of funding encourages an integrated care approach across the patient journey.
Efficiency also refers to the best and innovative use of available human, infrastructure and financial resources to support the right care at the right time, and avoid duplication of work within the system.
Data collection will continue to focus on supporting core provincial priorities outlined in this system plan. This information will help the network plan and manage capacity so Ontario will be prepared to provide services for future patients.
- Improve coordination of care between renal programs and partners in primary, home and community care
- Optimize system and capacity planning, funding models and data collection to support efficient use of resources
“As my husband’s health and quality of life deteriorated, he made the decision to stop dialysis. He wanted to die at home, but the supports that we expected and needed so desperately were not always there. There were problems with respite care and medications, along with an overwhelming anxiety that we were not doing our best to make him comfortable and at peace. The ideal care would be a collaborative approach with a palliative care specialist, a designated nephrologist, other specialists as needed, and most definitely with the patient and caregiver.”
Vivian B.’s husband, Gerry, was a senior executive in the federal public service. He was diagnosed in 2013 with multiple myeloma, and shortly after, his kidneys failed. He died at home in 2016.
Deliver kidney care using best evidence
Effective kidney care means that services are based on best evidence and contribute to the best possible outcomes for patients, in alignment with their goals of care.
Living with chronic kidney disease can be a unique and challenging experience for patients and their families. These challenges can be further compounded for women with kidney disease who are or want to become pregnant. They require access to very specialized, multidisciplinary care before, during and after their pregnancy. We[*] will work with patients, caregivers and Regional Renal Programs to define best care and ensure it is accessible to all.
We will also strive to improve the quality and experience of kidney care by focusing efforts on certain aspects of dialysis that we know are important to patients and caregivers. These areas include cannulation[*] and catheter-related infections. We will introduce initiatives to reduce hospital admissions, readmissions and emergency department visits.
An important aspect of this goal – and all our work – is our focus on continually improving how the health system works, based on evidence. As a learning health system,[*] we develop our work based on the experience and expertise of those in the kidney care system – healthcare professionals, patients and caregivers. We continually monitor what works and what doesn’t, share what we’ve learned and use the evidence to make the system better.
- Strengthen Ontario’s renal system as a learning health system[*] through implementation, continuous evaluation and knowledge translation
- Enhance quality standards for acute and chronic in-facility dialysis
- Strengthen care delivery for patients with glomerulonephritis[*] and women with chronic kidney disease requiring maternal healthcare
“I always wanted a lot of kids. But I was diagnosed with focal segmental glomerulosclerosis just 2 years after I was married. As my kidneys progressively declined, I was told that I wasn’t healthy enough to have a baby. It was heartbreaking. Even after I started nocturnal home hemodialysis and I finally started to feel better, I worried that my body, which had failed me so often, couldn’t conceive or carry a healthy child.”
Matti Y. was referred to a glomerulonephritis specialty clinic at Sunnybrook Health Sciences Centre where she received multidisciplinary care throughout her pregnancy. She delivered a healthy son in June 2017.
Improve patients’ access to the care they need
For people with chronic kidney disease, a critical period is the approach of end-stage kidney disease. During this time, they are at high risk of developing severe complications of their disease and are faced with making crucial and complex decisions that will affect their lives.
We[*] will work towards this goal by supporting access to multi-care kidney clinics. These clinics support patients and caregivers in making decisions based on their goals of care. The multidisciplinary team includes nephrologists, nurses, dietitians, pharmacists and social workers. Timely referral to multi-care kidney clinics is associated with positive outcomes, including:
- delayed need for renal replacement therapy
- greater likelihood of starting dialysis on a home-based therapy
- significantly fewer urgent dialysis starts
- fewer hospital days in the first months of dialysis
- longer survival once on dialysis
- Kidney transplantation provides the best long-term outcome for patients with end-stage kidney disease. It offers better quality of life and reduced risk of dying from kidney disease.
Kidney transplantation provides the best long-term outcome for patients with end-stage kidney disease. It offers better quality of life and reduced risk of dying from kidney disease.
Our continued work to increase access to kidney transplantation will focus on increasing awareness and knowledge about the benefits of living kidney transplantation for healthcare professionals, patients and their caregivers. Compared with a deceased donation, living donation offers the best results for the patient and may significantly reduce how long they have to wait for a transplant.
- Increase access to kidney transplantation with a focus on living kidney donor transplants
- Ensure access to high-quality care in multi-care kidney clinics
“About a year ago, my nephrologist told me my kidney transplant (from a deceased donor) should come through in about a year. So, is it imminent? Who knows? I did all the tests and was told I should be moving on to the assessment phase, but I don’t even know if I am on the waiting list for a kidney. The lack of communication is so frustrating.”
Bob M.’s kidneys failed following radiation treatment for liposarcoma, a type of cancer, in 2012 when he was 69. He started in-facility hemodialysis in 2015 and received a kidney transplant in September 2018.
Chronic Kidney Disease in Ontario
Why Ontario needs a renal plan
Almost 12,000 Ontarians with advanced chronic kidney disease require dialysis. An additional 10,000 people in Ontario have advanced chronic kidney disease and receive care from multi-care kidney clinics.[*]
Living with this disease can present tremendous challenges to patients and their caregivers. Depending on the stage of disease and treatment, they may have to deal with:
- significant physical discomfort
- emotional distress
- financial difficulties
- major lifestyle changes
The Ontario Renal Plan shows patients, caregivers and healthcare professionals there is a system dedicated to partnering with them to make continual improvement over the long term.
Kidney disease trends
When a person’s kidneys stop working, dialysis or a kidney transplant may be required to replace kidney function.
Nearly 12,000 people in Ontario receive dialysis.[*]
The number of people on dialysis has grown by an average of 2.3% per year in recent years.
Number of people receiving chronic dialysis, 2015 to 2018[*]
- 2018: 11,610
- 2017: 11,316
- 2016: 11,179
- 2015: 10,836
Several factors are driving an increased need for kidney care, including dialysis.
- Growing population: In 2017, Ontario was home to more than 14 million people. By 2041, our population is projected to grow to 20 million.[*]
- Aging: Chronic kidney disease is more common in the later years of life. Seniors ages 65 and older now represent about 17% of Ontario’s population. This is expected to rise to more than 24% by 2041.[*]
- Diabetes: Diabetes is the most common cause of chronic kidney disease. About 1.6 million Ontarians, representing over 10% of the provincial population, are living with diabetes.[*]
- Hypertension: High blood pressure increases the risk of getting kidney disease and of making it worse. More than 2 million Ontarians have high blood pressure – about 18% of the population.[*]
The rate of home dialysis is increasing steadily
Dialysis at home has been shown to improve outcomes, quality of life and independence for patients who choose dialysis as their treatment option. Over the past 4 years, efforts have been made across the Ontario Renal Network to support patients who wish to dialyze at home, and there has been an increase to the rate of home dialysis across Ontario.
More kidney transplants are needed
Kidney transplantation, especially from a living donor, provides the best long-term outcomes for people with end-stage kidney disease. People who have a transplant have a better quality of life and a reduced risk of dying from kidney disease. However, donor organs remain limited and recipients wait a long time for a transplant.
In Ontario, deceased donor kidney transplants have been growing, with the highest number on record achieved in 2017. Living donor transplant numbers have remained static for the past few years.
Strategies to increase access to living kidney donor transplants give people the opportunity to get the best available treatment for end-stage kidney disease.
Chronic kidney disease does not affect everyone in the province equally
Some groups of people in Ontario are at higher risk for developing the disease and face greater challenges in receiving care.
Compared with other Canadians, First Nations, Inuit, Métis and urban Indigenous people are more than 3 times as likely to need treatment for end-stage kidney disease. On average, they must travel 4 times the distance to receive treatment.
The Ontario Renal Plan provides a road map for the way we will work together to reduce the burden of chronic kidney disease on people and the health system.
For more information
Putting the Ontario Renal Plan into action
Developing and implementing the Ontario Renal Plan involves the collaborative efforts of many individuals across all areas of the kidney care system. From patients and their caregivers, nephrologists, Regional Renal Programs and partners, to provincial renal offices and the Ministry of Health and Long-Term Care, we[*] all share a commitment to improving the quality, experience and outcome of care for people affected by chronic kidney disease.
Patient and family engagement is the cornerstone of the person-centred approach to our work. People with chronic kidney disease and their caregivers offer unique perspectives on the healthcare system.
Thank you to the more than 100 patients and caregivers from across the province who shared their views about the kidney care system and helped guide the development of the Ontario Renal Plan. Their experiences and advice were vital in creating a plan that addresses the diverse needs and values of the populations we serve.
Regional Renal Programs
The Regional Renal Programs are especially important in the collective work to improve the quality and delivery of kidney care services. They use the Ontario Renal Plan to guide their work at the local level. Together with their local Patient and Family Advisory Councils, Local Health Integration Networks (which will, in time, transition to Ontario Health and Ontario Health Teams) and long-term care homes, the Regional Renal Programs make sure people across Ontario can access high-quality kidney care services as close to home as possible.
It is at the local level that dedicated front-line healthcare professionals and behind-the-scenes program administrators implement the improvements in care described in this plan.
“For a frontline worker such as myself, a provincial renal plan provides a structure to build an individualized care plan for each patient I come into contact with. The work that comes out of the Ontario Renal Plan provides me with the best practice guidelines, data reports and processes that guide the care I deliver. With a clear view of the big picture, I can focus on what matters: the patient in front of me.”
Dialysis Access/Independent Dialysis Registered Nurse
Health Sciences North Horizon Santé-Nord
Recipient of a 2018 Human Touch Award
Provincial and Regional Medical Leads provide leadership and expert advice to help improve the kidney care system. The Ontario Renal Network’s Medical Leads, who are primarily nephrologists, participate on expert panels and advisory committees, and as reviewers to support our work including the development of guidelines and other evidence-based clinical tools and educational information. With their expertise, we translate knowledge and evidence into planning, policy and program design recommendations and decisions across the kidney care journey. Their contributions are essential to achieving our goals.
Working with the government
The Ministry of Health and Long-Term Care reviews and assesses the Ontario Renal Plan and provides funding for its programs and projects. We advise the ministry about the kidney care system and regularly report on the results of our work.
For more information
Accountability and measurement
We[*] are accountable to the Ministry of Health and Long-Term Care, our network and the people of Ontario for meeting the commitments outlined in this plan.
An annual business plan submitted to the ministry and a detailed internal operating plan set out how we will work with renal system partners to develop and put in place projects and programs to support the plan’s goals and strategic objectives.
There is a robust measurement plan, including performance indicators, to measure progress.
Progress will be reported in several ways:
- Annual report
- Quarterly and special program reports
- Quarterly reports on our accountability and funding agreements
All of this information is used to adjust planning and respond to changes.
Progress to date
This Ontario Renal Plan was built on the achievements of our previous plans.
The inaugural Ontario Renal Plan, 2012 to 2015, addressed the detection, diagnosis and treatment of chronic kidney disease in a systematic way for the first time in this province’s history.
The second Ontario Renal Plan, 2015 to 2019, continued to strengthen the kidney care system with a focus on patient engagement, integration of care and access to care.
Measuring and reporting progress helped to identify areas in which work needs to continue to achieve the goals of the plan.
Read more about the Ontario Renal Network’s second Ontario Renal Plan 2015- 2019.
For more information
About this plan
The Ontario Renal Plan is a road map for the way we[*] will work together with Regional Renal Programs, nephrologists, patient and family advisors, partners and the provincial government to develop and deliver kidney care services through to 2023.
The goals and strategic objectives in the plan help to:
- ensure patients and their caregivers are partners in their care
- identify priorities to guide our work at all levels
- focus our efforts where they are most needed
- advise the government on major initiatives and funding decisions
- develop program-level strategic plans
- bring together many partners within our complex health system
Developing the plan
The Ontario Renal Network began by reviewing the performance of the kidney care system and progress made under the previous plan (2015 to 2019).
We also consulted with more than 450 people from our network, including the Regional Renal Programs, nephrologists, partners, patients and caregivers (including patient and family advisors from the Regional Renal Programs). We are grateful for their insights and expertise.
This information helped us understand how patients and caregivers experience their care, the system’s strengths and opportunities for improvement.