Renal News Annual Edition- 2020, A Year in Review

Annual Edition

RenalNews

Y E A R

I N

R E V I E W

Welcome!

Welcome to the second annual edition of Renal News! Here, we bring you a snapshot of many of our network’s initiatives over the past year or so, and the committees and groups that make them happen. In many cases, we also look ahead to 2021.

Throughout, you will find links to related parts of the BC Renal website, BCRenal.ca, where you can learn more. We hope you enjoy getting to know our BC Renal community and provincial network better through this special edition!

Contents Message from BC Renal Executive Director.....................................................................................................1 Our Network & Partners................................................................................................................................................... 2 Kidney Disease in British Columbia........................................................................................................................3 Sharing BC’s Expertise: Consultation by Dr. Adeera Levin Benefits Kidney Patients in Australia.......................................................................................................................................................................................4 COVID-19.....................................................................................................................................................................................6 Patient Partners & Patient Engagement........................................................................................................... 10 Annual Campaigns & Knowledge Translation.............................................................................................. 16 Spotlight on: Pediatric Clinical Pathway Development Team.......................................................... 25 Improvements Driven by BC-Wide Committees.......................................................................................28 Improvements Driven by BC-Wide Professional Groups.................................................................... 45 Meaningful Outcomes...................................................................................................................................................58 Engagement Platforms.................................................................................................................................................59

Message from BC Renal Executive Director Dear BC kidney community, Since last March, everyone in our BC Renal network has been faced with professional and personal challenges most of us had never experienced nor imagined before.

The COVID-19 pandemic has affected every aspect of how we plan for and deliver kidney care and services in BC. It has forced us to rethink how and where patients can safely receive treatment; how we effectively share information and resources with patients and families and support them in living well with kidney disease.

Across our network, patient partners, provincial committees, professional groups, clinical teams and administrators have rapidly risen to the occasion, developing and providing clinical guidelines, patient information and virtual care options. We have implemented solutions to a wide range of challenges related to outpatient lab testing, patient transportation and access to a variety of surgical services.

Within the current context of the pandemic, our committees and groups have moved forward with numerous projects to advance the BC Renal community’s goal of offering people living with kidney disease the best possible care and quality of life.

As always, I want to acknowledge and thank all of you for what you have done, are doing and will do in the months to come. We have not finished this difficult journey, and uncertainty remains as to how long the road actually is. I continue to be inspired by how our network and our patients and families have risen to meet so many challenges. You demonstrate courage, dedication and compassion each day.

With much gratitude, Dr. Adeera Levin Executive Director

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Our Network Our network model is unique in Canada and internationally. We provide a fully coordinated system of care for kidney patients no matter where they live in the province.

Health authorities

Home hemodialysis training sites the northern way of caring

Peritoneal dialysis clinics

Hospital dialysis units

CKD clinics

for registered non-dialysis kidney patients

Community dialysis units

Our Partners:

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Kidney Disease In British Columbia

16,611 Registered non-dialysis kidney patients in BC 3,584 Kidney disease patients on dialysis in BC

Centre for Health Evaluation & Outcome Sciences

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Sharing BC’s Expertise: Consultation

by Dr. Adeera Levin Benefits Kidney Patients in Australia Over the years, BC Renal and our executive director Dr. Adeera Levin have shared our made-in-BC kidney care network model - and the many positive health and system outcomes it has enabled - with jurisdictions across Canada and around the world. A recent example is an external Statewide Renal Services Review for Queensland Health in Australia in 2018. As we look back on 2020, we are pleased to relay that the consultation has led to substantial improvements in kidney care for the state.

As part of her assessment, Dr. Levin offered 10 key recommendations, which included actions such as: •

Better integration of information and reporting of outcomes

•

Alterations in funding models to support team-based care irrespective of the location of patients, and

•

Patient-, clinician- and administrator-led committees to oversee initiatives and change.

Two years later, the region reports successful implementation of many of the recommendations, which have led to substantial improvements in kidney care. One example is a 29% increase in the number of patients receiving chronic hemodialysis with a functioning arteriovenous fistula or arteriovenous graft by the end of 2019-2020 year.

Some other key improvements include: •

196% increase in the number of patients who have had a decision recorded about transplant suitability

•

326% increase in the number of patients who have been approached regarding advanced care planning

•

9% increase in the number of patients who started home or independent dialysis, and

•

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201 additional patients receiving specialist care at a Primary Health Care clinic.

Importantly, a substantial portion of those who have benefited from these improved outcomes (21%) are Aboriginal or Torres Strait Islander patients, who have traditionally been underserved.

It was a privilege to be able to meet the patients, clinicians, researchers and administrators in Queensland, to hear their frustrations and concerns, and also their willingness to collaborate on making changes. I believe the system was ready for change, and I served as a facilitator and catalyst, but all the hard work was done by those in the state.

I also think that before the work started, I was very clear that I did not want to produce a report to sit on a shelf, but rather wanted to help the group make changes, and so was certain when I started that there was a real willingness to change.

- Dr. Adeera Levin

One of the most important recommendations by Dr. Levin included the formation of the AKC2026 Collaborative, a group of patients, clinicians from many disciplines, researchers and administrators dedicated to standardizing the delivery of care, improving equitable access to public kidney care services and aligning resources for the delivery of care.

Dr. Levin’s recommendations for the Queensland Health renal network were informed by the work of her and her many BC colleagues in developing and evolving the BC Renal network over the past 20-plus years.

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Our COVID Heroes!

COVID-19 and Our Kidney COVID Heroes

As COVID-19 spread and was declared a pandemic in March of 2020, patient partners, clinical teams, leaders and BC Renal staff across our BC Renal network mobilized quickly.

They rose to the challenge of dealing with many unprecedented changes to kidney care, services, transportation, communication and more.

Clinical guidelines were developed and various communications with patients and health professionals were implemented to help everyone adjust quickly to the changes. Two web pages were created to provide a central location for COVID-19 resources: COVID-19 Information for Patients: BCRenal.ca  Health Info  Prevention & Public Health  Novel coronavirus (COVID-19) COVID-19 Information for Health Professionals: BCRenal.ca  Health Professionals  Clinical Resources  Novel coronavirus (COVID-19) All the hard work did not go unnoticed.

To provide recognition of these efforts, BC Renal put out a call for nominations of “COVID Heroes.” More than 15 individuals and teams were nominated for their exceptional response to the pandemic, showing leadership and courage during a time filled with uncertainty.

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Watch the Kidney COVID Heroes video here:

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PROMIS Team Adapts to COVID Needs, Continues Work on New and Improved Version of Information System PROMIS – the Patient Records and Outcome Management Information System – is the only province-wide integrated registry and clinical information system for kidney disease and transplant patients.

Top 3 Accomplishments: 1. New Functionality Added for COVID Response: Several priority updates were implemented to support the clinical response to COVID-19. In spring 2020, four updates added functionality to support data collection and reporting associated with COVID, and in the fall, additional features were added to facilitate the scheduling and tracking of virtual visits.

2. System Updates Continue: Efforts to transition PROMIS from its classic version to its new and improved version, PROMIS 4, continued in 2020, and into 2021. This includes upgrades to methods for reporting tuberculosis services, physical exams, complications, glomerulonephritis drug applications, patient infectious status and immunizations, immunology results, human leukocyte antigen lab requisitions, biopsy results, and several other key indicators.

These updates ensure the ongoing availability and sustainability of PROMIS. 3. New Post-COVID Provincial Program Implemented through PROMIS: The Post-COVID Recovery program builds on PROMIS’ strengths by delivering a longitudinal patient record for those who have tested positive for COVID-19 and have been referred to a Post-COVID Recovery Clinic. In particular, it captures patients in ambulatory settings, supporting clinical care and outcomes reporting.

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It’s been really rewarding to see the team pivot to quickly deliver solutions to the emerging needs this past year – whether it was about COVID-

PROMIS

related data capture and reporting, or building in support for the shift to virtual visits – all while managing an overnight transition to remote work. They showed resilience and a commitment to their work and one another, as well as the patients and providers supported by PROMIS, in these unprecedented times.

– Karin Jackson , Director of Operations, PROMIS

Web info & resources: BCRenal.ca ⊲⊲ Health Professionals ⊲⊲ Professional Resources ⊲⊲ PROMIS

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Patient Partners & Patient Engagement

ď‚ Patient goal-setting workshop hosted by BC Renal, February 2020

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New Strategy and Tools Aim to Empower Patients Through Goal-Setting

In February 2020, BC Renal convened a group of health professionals, patients and family

Goal-Setting History

members living with chronic kidney disease and

Over the past decade,

representatives of The Kidney Foundation - BC &

BC Renal consistently

Yukon Branch for an action-planning workshop. The

identified goal-setting as an

purpose was to discuss the important topic of how

area of improvement across

to collectively advance patient goal-setting across

all modalities of kidney care

our provincial kidney network.

and all kidney programs.

In response, BC Renal

What is patient goal-setting?

and the kidney programs

Patient goal-setting is a key element of patient self-

collaboratively organized

management. It involves gathering information and

a series of focus groups in

setting specific goals between health professionals

2019 and the February 2020

and the patient for living well. The focus is on what

workshop.

matters to the patient.

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The process involves a series of conversations to: •

understand what matters to the patient

•

set an overarching medical and/or non-medical

• •

goal

It’s helpful for patients to

break it down into shorter-term goals over time

have goals to achieve –

that have realistic and concrete action plans, and

from adjusting medications

follow up and provide support if needed.

to creating an exercise plan to talking with a therapist

Why is it important?

– to improve their lives and

Setting a collaborative goal that focuses on what

living with their illness.

matters to the patient is an important means for empowering and motivating patients in managing

~ Jana Sadler, BC Renal

their chronic condition. Since goal-setting is done

Patient Partner

in close collaboration with the patient’s kidney care team, this process also allows health care professionals to better understand their patients and provide more tailored care.

New strategy document serves as a practical guide The February 2020 action-planning activities resulted in a new patient goal-setting document, which was formally introduced at BC Kidney Days in November. “Better Together: A Strategy to Advance Collaborative Patient Goal-Setting in Kidney Care” can be used by care teams in kidney programs as well as patients to take concrete action in improving patient goal-setting in various ways.

Worksheet provides step-by-step tool A worksheet that serves as a step-by-step tool includes the key improvement ideas from the provincial workshop and is available within the strategy document, and as a stand-alone tool.

Additional tools that are part of a “toolbox” are described and linked in the strategy document.

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My hope is that the framework offers a document that is not only easily accessible electronically with links to key information but that it also stimulates further internal collaboration and discussion towards actionable outcomes. ~ Paula Hann, Program Director, Renal Services, Interior Health Authority

Ministry & Accreditation Alignment Collaborative goalsetting aligns with the principles of person- and family-centred care and corresponds with the BC Ministry of Health and Accreditation Canada’s approach.

Patient & Family Engagement Working Group: What does it do?

Strives to put patients and families at the centre of a kidney health system that includes their voices and perspectives in the planning and improvement of kidney care.

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Who are patient partners?

After 1 year, we have:

A patient partner is a patient, or family member/caregiver of a patient, who: •

has lived experience with (or is

patients/ family members in the network

at risk of) kidney disease •

active patient partners

is interested in making a difference in kidney care

•

is open to sharing their

engagement opportunities

experience and working with

patient partners completed an orientation

health care professionals and other partners.

Did you know?

When surveyed, 92% of patient partners:

Patient partners have told us many patients prefer to be described as “people living with kidney disease” rather than “kidney patients” when possible. This makes a lot of sense to us. We strive to use this language when space permits

felt that they were able to express their ideas comfortably felt that their ideas were heard were satisfied with the engagement opportunities

and to use “kidney patients” or “patients” only when shorter terms are required.

Web info & resources: BCRenal.ca ⊲ Health Info ⊲ Managing My Care ⊲ Self-Management BCRenal.ca ⊲ Health Professionals ⊲ Clinical Resources ⊲ Self-Management

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Annual Campaigns & Knowledge Translation

ď‚ Visit kidneyhealthcheck.ca

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Kidney Health Month

Every March, through Kidney Health Month campaigns and World Kidney Day, BC Renal promotes public awareness about how to keep our kidneys healthy, risk factors for kidney disease and early diagnosis.

In 2019 and again in 2020, we partnered with The Kidney Foundation of Canada - BC & Yukon Branch on a light-hearted video, print, transit, web, and social media campaign called, “Could you Lose 80%” to guide the public to KidneyHealthCheck.ca and BC Renal’s online Kidney Health Self-Assessment tool.

Available in English, Chinese and Punjabi, the tool provides a high-level assessment of kidney disease risk factors, and encourages those at higher risk to discuss kidney function testing (a simple blood test) with their primary care provider/family doctor.

2020 also saw a refreshed version of our 31-day #KidneyHealthChallenge campaign that provides a daily tip for keeping our kidneys healthy and comes with a downloadable one-page calendar and multi-page booklet.

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Unfortunately, the onset of the COVID-19 pandemic mid-March cut some of our 2020 efforts short, but we were able to implement a number of aspects of our campaigns and have renewed our plans for Kidney Health Month 2021.

For more about our variety of campaigns, see our Kidney Health Month web page at the link below.

Web info & resources: BCRenal.ca ⊲ Health Info ⊲ Prevention & Public Health ⊲ Kidney Health Month BCRenal.ca ⊲ Health Info ⊲ Prevention & Public Health ⊲ Kidney Health SelfAssessment www.kidneyhealthcheck.ca

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Emergency Preparedness Updated resources complement disaster management plan Disasters such as an earthquake or power outage can impact us all, and especially people who require dialysis. During such an emergency, it helps to be prepared.

Throughout 2020, BC Renal worked with patient partners to update our Emergency Preparedness Handbook for patients. The resource was edited for clarity and expanded to include new sections, for example, addressing mental health during an emergency. .

A variety of patient forms and handouts included in the booklet are also now available in Chinese and Punjabi.

As well, we created an Emergency Preparedness video that provides viewers with a short overview of what to do during a disaster.

Both resources will be officially launched on the BC Renal website this May during Emergency Preparedness Month.

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Emergency Preparedness Month Every May, the BC Renal network promotes emergency preparedness to all kidney patients, staff and physicians. The aim of this initiative is to increase the community’s collective ability to respond in the event of a disaster.

BC Renal’s individual resources available for patients and care teams are complemented by the Provincial Renal Emergency Management and Business Continuity Plan that is maintained by our provincial Emergency Management Committee.

Web info & resources: BCRenal.ca ⊲ Health Info ⊲ Managing My Care ⊲ Emergency Preparedness BCRenal.ca ⊲ Health Professionals ⊲ Professional Resources ⊲ Disaster Planning

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Education and Knowledge Translation At BC Renal, education and knowledge translation are very important components of our mandate. In 2020 and into 2021, we offered numerous clinical and patient education opportunities to our kidney health professionals, patient partners, and British Columbians living with kidney disease to help them be up-to-date on new research, resources and practices in care.

We also created a new web section called Learning and Events to provide a central location where all members of our kidney community can find links to new and recorded sessions, organized under the following categories: •

Province Wide Rounds

•

Kidney Care Staff Education

•

CKD E-Learning for Primary Care

•

Patient Education Webinars

•

BC Kidney Days

•

Archive of Western Canada PD Days

New in 2020, due to COVID-19, we offered a series of expanded Province Wide Rounds specifically addressing various aspects of our response to the pandemic.

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ď‚ Virtual session "Positive Reflections: A BC Kidney Community Perspective on the COVID-19 Pandemic", BC Kidney Days Goes Virtual, 2020

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Goes Virtual!

We also moved BC Kidney Days online and switched patient education from being a mix of in-person and online to 100 percent online with our new Patient Education Webinar series.

Together, these learning opportunities support our patients to have the best possible care and outcomes.

Web info & resources: BCRenal.ca ⊲ Learning/Events

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Research and Quality Improvement Kidney health professionals across BC are engaged in a range of local, provincial and international research and quality improvement projects, many in collaboration with BC's educational institutions. Their work is frequently published in peer-reviewed journals.

Innovation and Research in Kidney Care 2019 & 2020 • 52 journal articles published by Division Members • 12 journal articles linked to projects

Clinical Studies n=20 Database Studies n=26 40%

17% 20%

2% 15%

22% 22%

0% CKD

GN

2% 9%

7%

Dialysis

Transplant

Web info & resources: BCRenal.ca ⊲ Research BCRenal.ca ⊲ Research ⊲ About Our Research - Publications

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4% PCKD

Spotlight on: Pediatric Clinical Pathway Development Team

The Pediatric Clinical Pathway Development Team: What does it do?

Collaborates with a variety of sub-specialty programs, allied health professionals, family doctors, pediatricians, and community partners to develop standardized, evidence-based, multidisciplinary, and locallyrelevant clinical pathways for the various childhood kidney conditions affecting British Columbians Kidney Disease (ADPKD).

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Pediatric Clinical Pathway Development Team Seeks to Improve Quality of Care for Children Top 3 Accomplishments: 1. Distributing Nephrotic Syndrome Toolkit: To ensure that families are well equipped to manage their child’s condition right from the start, a toolkit consisting of patient- and family-focused educational material is being distributed, which includes a Childhood Nephrotic Syndrome Parent Handbook and Childhood Nephrotic Syndrome Worksheets.

2. Engaging Next Generation of Health Professionals: Engaging students and trainees in the pathway development process continues to be an important team goal. Past projects have directly informed the local use of steroid-sparing agents, and when to perform a kidney biopsy in children with nephrotic syndrome. More recently, a student-led quality improvement project is underway that will examine pathway uptake in regional clinics across the province and identify how the team can better support community-based health professionals.

3. Implementing Quality Improvement Project to Understand Congenital Anomalies: Building on previous experience, the team has formulated a clinical pathway template for how to develop pathways, which includes key steps for ensuring that they are rooted in high-quality evidence, relevant to different users, and responsive to future change. This template is now being used as a framework to develop a clinical pathway for children with congenital kidney anomalies. Specific goals include identifying outcomes, developing a predictive model for these outcomes, and translating this model into risk-based clinical care.

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More about the Clinical Pathway Development Team (as described on the BC Children's Research Institute website)

I am, as always, impressed by and grateful for all the

With a commitment to quality and excellence

excellent care [my child]

in clinical care, the Division of Nephrology’s

receives here. Thanks!

Clinical Pathway Development (CPD) Team was established to help transform established best

~ Parent of a child living with

practices and innovative research findings into

kidney disease

standardized clinical care and improved patient outcomes. The CPD Team endeavours to elevate the patient care experience by empowering pediatricians, primary care physicians, allied health practitioners, and patients and families themselves, with cutting edge knowledge, exceptional care, and uncompromised quality.

Web info & resources: https://www.bcchr.ca/nephrology/current-research/quality-program

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Improvements Driven by BC-Wide Committees In 2020, BC Renal committees led or co-led a number of initiatives that aim to meet the specialized needs of people living with kidney disease.

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KCC Committee Advances Transplant Initiative and Increases Patient Education and Resources Top 3 Accomplishments: 1. Transplant First Project Enters Phase 2: This project focuses on the implementation of enhanced pre-transplant clinical processes, tools and resources (developed in Phase 1) across BC’s Kidney Care Clinics, Regional Transplant Clinics and Provincial Transplant Centres. The goal is to ensure every patient who is a potential kidney transplant candidate is identified, assessed and supported along the path toward transplantation as the treatment of choice, including assistance in finding a living donor.

2. New Provincial Patient Education Webinar Series Launched: This newly established provincial Patient Education Webinar series supplements the patient education provided by BC’s Kidney Care Clinics. The sessions are offered monthly via Zoom and focus on modality choices and transitions. Examples of topics include a general modality choices session, transplant, peritoneal dialysis, home hemodialysis, facility-based hemodialysis and vascular access. In 2020, the number of participants ranged from 30 to 100 depending on the topic. Feedback on the sessions has been very positive.

3. ADPKD Initiative Continues: Our initiative to support patients living with Autosomal Dominant Polycystic Kidney Disease continues to provide patients with valuable, new resources (see ADPKD Advisory Group article in Professional Groups section for details).

Other accomplishments: •

Implementation of care team transition guides and patient transition guides

•

Creation of staff and patient resources for home blood pressure monitoring (in progress)

•

Implementation of virtual visits in BC’s Kidney Care Clinics (in progress)

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Now that there is a high level of awareness around the value of transplantation, the goal of this next phase of

The Kidney Care Committee (KCC): What does it do?

•

guidelines, tools and resources

Transplant First is to make sure that our clinics and teams are all structured to ensure that

Develops provincial standards,

•

Monitors quality indicators

supporting transplantation is a key priority

to identify areas for ongoing

so that as many patients as possible can

improvement

benefit from this life changing and life saving

Groups accountable:

treatment.

•

Transplant First

•

Autosomal Dominant Polycystic

~ Dr. Mike Bevilacqua

Kidney Disease (ADPKD)

Web info & resources: BCRenal.ca ⊲ Health Info ⊲ Kidney Care Treatments ⊲ Transplant BCRenal.ca ⊲ About ⊲ Events ⊲ Patient Education Webinars BCRenal.ca ⊲ Health Professionals ⊲ Clinical Resources ⊲ Transitions in Kidney Care BCRenal.ca ⊲ Health Info ⊲ Managing My Care ⊲ Transitions in Kidney Care

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Patients with GN to be Supported with New Initiative, Improved Drug Options Glomerulonephritis (GN) Committee: What does it do? •

Identifies, implements and evaluates health care programs and health policy initiatives for patients with glomerulonephritis

•

Ensures communication of such activities to relevant stakeholders

Top 3 Accomplishments: 1. GN Atlas Undergoes Enhancements: This past year, the GN Committee has been working to enhance its provincial glomerulonephritis atlas, the first-ever atlas that describes the patterns of GN disease in BC. In subsequent years, the committee plans to publish the atlas and start providing annual updates, including an indepth coverage of one GN sub-disease per year.

2. Strategy for Rituximab-like Medications Outlined: Rituximab is one of the most expensive medications required by a subset of people living with GN. However, several biosimilar drugs are expected to enter the Canadian market in the near future. The GN Committee has been proactively conducting a review and comparison of these medications, and proposed a multi-prong strategy for these upcoming drugs that focuses on providing best-practice and evidence-based care, balanced with financial responsibility.

3. Initiative to Support People Living with GN Begins: The GN Committee recently launched a ground-breaking patient engagement initiative to better understand the needs of people living with GN in BC and develop a corresponding support strategy. To date, two patient focus groups and several one-on-one interviews with patients have been conducted. Once the results are analyzed in early 2021, a strategy to support people living with GN in BC will be outlined.

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Other Accomplishments: •

Developed guidelines for pneumocystis pneumonia (PCP) prophylaxis in GN patients treated with immunosuppressant medications

•

Developed a rituximab funding policy for patients with membranous nephropathy (MN)

•

Looking back to 2019, launched the BC Renal/UBC fellowship program in GN, with the first-ever GN fellow from Ireland starting a 2-year program

As care providers, we often tend to focus on the disease aspect of the patient journey. However, we must look at our patients more holistically and try to help them in a broader context of their everyday lives. This is especially true for people with rare kidney diseases such as glomerulonephritis, particularly those who may live in rural communities with limited access to care, or who may not know anyone else with GN and so feel socially isolated with their disease.

Understanding and addressing the needs of these patients beyond the infrequent clinical touch points may help them to achieve a better quality of life, and empower clinicians to provide a more whole-personfocused care. ~ Dr. Sean Barbour

Web info & resources: BCRenal.ca ⊲ Health Professionals ⊲ Clinical Resources ⊲ Glomerulonephritis

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HHD Committee Creates New Videos and Translated Materials, and Works to Expedite Home Dialysis for Acute Patients Top 3 Accomplishments: 1. Patient Home Hemodialysis Videos Produced: The committee has developed short video vignettes of patients sharing their experiences about training, support, and quality of life aspects of home hemodialysis. The videos are designed to be helpful to patients as they choose an appropriate modality for their lifestyle.

2. Home Hemodialysis Training Materials Translated: This past year the HHD patient workbook was translated into Chinese and Punjabi to support training and follow up. Prioritizing the translation of this resource was important as home hemodialysis is the modality of choice of 12.4% Asian Oriental/Chinese and 4.8% of South Asian/Asian Indian patients in British Columbia.

3. Project to Expedite Home Dialysis Among Acute Hemodialysis Patients Continues: Known as the CRASH project, its goal is to promote home dialysis among acute hemodialysis patients through an expedited assessment, structured educational program, and early exposure to home dialysis options. These interventions address a gap in the education of patients who are appropriate candidates for home hemodialysis or home-based peritoneal dialysis but have been unable to receive training in a kidney care clinic. This project has been extended as a result of the pandemic.

Home Hemodialysis Committee: What Does it Do? •

Helps coordinate the delivery of an independent dialysis program throughout the province, ensuring high quality, safe and equitable patient care

•

Provides direction to local programs and self-care

•

Leads development of provincial resources, tools and guidelines

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Click here to watch the "It’s better at home" video series on our Youtube channel.

The videos will give people the chance to see the potential for their own success due to, and through, the successes of other patients. I think they will​go a long way to help people overcome their fears and concerns and take the next step to self-care home dialysis. ~ Dr. Michael Copland

Web info & resources: BCRenal.ca ⊲ Health Info ⊲ Kidney Care Treatments ⊲ Home Hemodialysis BCRenal.ca ⊲ Health Professionals ⊲ Clinical Resources ⊲ Home Hemodialysis

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PD Committee Improves Vendor Services and Creates New Resources for Patients Peritoneal Dialysis Committee: What does it do?

•

Develops best practice strategies

•

Uses a continuous quality improvement approach to care

Top 3 Accomplishments: 1. Peritoneal Dialysis Patient Service Improvement Project Completed: This project was developed as a result of an increase in frequency and complexity of vendor service challenges over the past few years.

“We wanted to provide PD patients in BC with high quality kidney services and treatment in a safe and timely manner to enhance their quality of life and improve their health outcomes,” explains PD Committee member Sue Saunders. As a result of this project, BC Renal has seen a significant improvement in issues management and a decreased workload among PD nurses and BC Renal staff.

2. New PD Resources Created: The new repertoire of resources includes e-learning modules, procedural videos, and complication management care paths to support patients and the health care team in rural remote communities.

3. Transition Guides Shared With the Broader Kidney Community: This year the PD Committee published a new manuscript, “Systematic Evaluation of Provincial Initiative to Improve Transition to Home Dialysis Therapies” in the Canadian Journal of Kidney Health and Disease. The manuscript is based on the development and implementation of care team and patient transition guides for PD.

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Re-designed PD Modules for patients Re-designed training videos for rural/remote clinics

Home dialysis is a huge and daunting responsibility. Caregivers and patients need their healthcare team to evaluate and change practices to improve their quality of care and their quality of life. The peritoneal dialysis community in BC is a small group of dedicated nurses, dietitians, pharmacists, social workers and physicians working with very committed leadership at BC Renal. ~ Dr. Suneet Singh, Provincial PD Medical Director

Web info & resources: BCRenal.ca ⊲ Health Professionals ⊲ Clinical Resources ⊲ Peritoneal Dialysis BCRenal.ca ⊲ Health Professionals ⊲ Clinical Resources ⊲ Transitions in Kidney Care

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HD Committee Develops Hemodialysisspecific Guidelines and Patient Resources for Infections, Including COVID-19 Top 3 Accomplishments: 1. Hemodialysis-Specific Infection Guidelines and Patient Resources Created: In partnership with infection control practitioners, the HD Committee developed provincial hemodialysis-specific infection guidelines and patient resources for COVID-19, MRSA, VRE, Hepatitis B, Hepatitis C, HIV, CPO bacterial infections, and Clostridioides difficile. Implementation of these guidelines within BC’s hemodialysis programs will help with prevention, containment and management of these diseases.

2. COVID-19 Screening Introduced at All BC HD Units: A standardized COVID-19 screening questionnaire was developed and implemented in all BC HD units in April 2020. Every patient is screened for COVID-19 symptoms at every hemodialysis treatment session. Screening data is entered into PROMIS (BC’s kidney and transplant patient information system) and trends are analyzed in combination with laboratory results.

3. Management of Complications in HD Guideline is Outlined: The Renal Educators Group completed the development of a provincial guideline on the Nursing Management of Complications During Hemodialysis. Upon being assessed by a small group of reviewers (e.g., nephrologists and pharmacists) and finalized by the HD Committee, the guideline is anticipated to be rolled out in 2021.

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Other accomplishments: •

Established a process for responding to critical incidents (e.g., technical issues with dialyzers) which may have provincial applicability

•

Updated several hemodialysis and vascular access guidelines, which are posted on the BC Renal website

•

Developing a Dialysis Workforce strategy and supporting documents

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The development of the provincial Management of Complications in HD Guideline by the Renal Educators Group has been a very positive experience as we have worked together to review the literature and current practices and collectively make recommendations that will directly benefit our patients. We will continue this collaborative work in 2021 as we work on our roll-out plan. ~ Jun Valentin, Chair, REG and Clinical Nurse Educator, HD, Fraser Health

Hemodialysis (HD) Committee: What does it do?

Creates procedures, protocols, and guidelines that support high-quality hemodialysis care in 41 hospital and community hemodialysis units across BC

Groups accountable: •

Renal Educators Group (REG)

•

Vascular Access Educators Group (VAEG)

•

HD Technical Group.

Web info & resources: BCRenal.ca ⊲ Health Professionals ⊲ Clinical Resources ⊲ Hemodialysis BCRenal.ca ⊲ Health Info ⊲ Kidney Care Treatments ⊲ Hemodialysis BCRenal.ca ⊲ Health Professionals ⊲ Clinical Resources ⊲ Novel coronavirus (COVID-19)

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Palliative Care Committee Creates Framework for COVID-Related Guidelines, and Strategy and Resources for Integrated Care Top 3 Accomplishments: 1. Framework to Manage Dialysis Resources During COVID-19 is Rapidly Implemented: As the COVID-19 pandemic began, the team mobilized quickly to create a Dialysis Resource Optimization Framework: Guidelines for Emergency Triage. This framework is an essential tool for guiding the distribution of resources and staffing to support ethical and patient-centred decision-making for kidney health care programs, which could be used within the BC Renal network, if needed.

2. New Publication Highlights 15 Years of Palliative Efforts at BC Renal: A manuscript, Advancing Palliative Care in Patients with CKD: From Ideas to Practice, captures a 15-year journey at BC Renal to systematically identify patients for advance care planning, address symptom assessment and management and provide care of the dying patient. The paper, by Helen Chiu, Dr. Gaylene Hargrove, Dr. Adeera Levin et al., was published in the American Journal of Kidney Health and Disease.

3. Integrated Palliative Nephrology Project Implemented: Kidney care providers and patients identified a need to develop and implement a provincial strategy to effectively integrate a palliative approach for all chronic kidney disease patients in BC, including the development of resources for staff and patients. The patient and staff informational resources have been a valuable and essential tool for those who are thinking about stopping dialysis or are transitioning to end-of-life.

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Other Accomplishments: •

Poster presentation at BC Kidney Days - A Proposed Ethical Framework: Balancing the Needs of Maintenance and Short-term Patients During a Pandemic

Our Integrated Palliative Nephrology Project working group has been nothing short of outstanding. Members generously gave their time and energy, listened to and learned from each other, and were honest and sincere in providing feedback. I'm also very grateful for our admin team who kept us on track. Working on the project has enabled me to grow as a kidney clinician and has

The Palliative Care Committee: What does it do?

Aims to improve access to high

motivated me to work even harder to advocate for the best quality of life possible for my patients throughout their illness journey.

quality, integrated palliative and end-of-life care for patients living

~ Dr. Gaylene Hargrove, Chair, Palliative Care

with chronic kidney disease.

Committee

Web info & resources: BCRenal.ca ⊲ Health Professionals ⊲ Clinical Resources ⊲ Palliative Care BCRenal.ca ⊲ Health Info ⊲ Managing My Care ⊲ Palliative Care

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Pharmacy & Formulary Committee Secures Cost-Saving Contracts, Funds Tolvaptan and Manages Drug Shortages

Top 3 Accomplishments: 1. Drug Contracts Yield Substantial Savings: The Pharmacy & Formulary Committee secured contracts for tolvaptan, sevelamer carbonate, tacrolimus and rituximab. Collectively, these agreements will yield an ongoing savings of approximately $4.5 million each year.

2. Funding for Key ADPKD Drug Approved: Tolvaptan is a drug used to treat ADPKD, but it previously was not available to all British Columbians. In January 2020, BC Renal began funding tolvaptan, making BC the first province in Canada to provide comprehensive public funding for this medication.

3. Patient Drug Access Sustained Throughout COVID: The Pharmacy & Formulary Committee has been able to manage drug shortages during the COVID-19 pandemic, ensuring that no patient goes without medication for kidney disease.

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These contracts enable us to ensure a stable, safe supply of medication at the best possible price, allowing us to fund as many drugs as possible.

In the coming year, we plan to establish more contracts, review new, first-in-class medications, and explore reconciling allergies across patient records. ~ Dan Martinusen, Chair, Pharmacy & Formulary Committee

Pharmacy & Formulary Committee: What does it do?

•

Determines which medications are essential in the care and treatment of patients with kidney disease and how they should be funded

•

Oversees four formularies, and collaborates with more than 30 community pharmacy partners

Web info & resources: BCRenal.ca ⊲ Health Professionals ⊲ Clinical Resources ⊲ Pharmacy & Formulary BCRenal.ca ⊲ Health Info ⊲ Managing My Care ⊲ Medication BCRenal.ca ⊲ Health Info ⊲ Kidney Care Treatments ⊲ Polycystic Kidney Disease Tolvaptan

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ď‚ HHDE Committee Zoom meeting

Improvements Driven

by BC-Wide Groups In 2020, BC Renal professional groups led or coled a number of initiatives that aim to meet the specialized needs of people living with kidney disease.

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HHD Educators Group Helps with Transition to Dialysis Equipment Merger, Develops COVID Protocols and Virtual Care Support to Keep Patients Safe Top 3 Accomplishments: 1. Vendor Transitions Successfully Coordinated: This past year two companies that make dialysis equipment – NxStage and Fresenius – merged. The HHD Educator group provided communication to both the vendor and patients during this transition to ensure minimal impact on our HHD patients.

2. COVID Safety Measures Implemented: The group developed documentation and protocols to keep patients safe at home during the COVID-19 pandemic. Regular meetings with educators around the province were conducted to create the protocols and to provide patients with important information about COVID-19 and chronic disease.

3. Virtual Support During COVID Expanded: The group coordinated care to keep patients safe at home during the COVID-19 pandemic, which included expanding virtual health practices.

In Home HD we are a small group of nurses. Our monthly meeting provides an invaluable forum to share unusual clinical and operational issues and discuss strategies to manage them. I believe that working collaboratively improves the quality of care we provide to our patients. ~ Mary Lewis, HHD Educator

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Home Hemodialysis Educators (HHDE) Group: What does it do?

Enhances and fosters excellence in the provision of education processes and materials that facilitate the achievement of patient independence in hemodialysis.

2020 was a crazy year for everyone, but especially in health care. We have had to endure a lot of change in a short period of time and adjust to a ‘new normal.’ I would like to commend our Home Hemodialysis Educators and BC Renal for the ongoing support for our patients, but also the ability for us all to adapt to the challenges that have been put upon us. In the words of Dr. Bonnie Henry, ‘Be kind, Be calm, Be safe.' ~ Angie Robinson, Chair, Home Hemodialysis Educator Group

Web info & resources: BCRenal.ca ⊲ Health Info ⊲ Kidney Care Treatments ⊲ Home Hemodialysis BCRenal.ca ⊲ Health Professionals ⊲ Clinical Resources ⊲ Home Hemodialysis BCRenal.ca ⊲ Health Info ⊲ Prevention and Public Health ⊲ Novel Coronavirus

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PD Nurses Group Implements Rural and Remote Resources, Introduces PD Cycler System with Remote Monitoring, Standardizes PD Nursing Care Top 3 Accomplishments: 1. PD Resources for Rural and Remote Healthcare Facilities Created: Resources to support PD patients residing in rural and remote communities have been developed and implemented to optimize outcomes and experiences for those receiving dialysis or non-dialysis related care in community health care facilities. A working group of PD clinicians and PD patient partners co-developed the resources, which include: patient wallet cards, emergency supply bags, a clinician self-lead PD module, procedural videos and PD complication care pathways.

2. Upgraded PD Cycler Implementation Underway: Amia with Sharesource is a patient-friendly PD cycler system that enables remote monitoring of treatment to support therapy management proactively. Implementation of this technology will result in timely access to therapy information, with the potential to improve clinical outcomes. In 2020, Amia with Sharesource was implemented within PD programs in Interior Health, Island Health and Vancouver Coastal Health, and in 2021 implementation will commence within Fraser Health, Northern Health and Providence Health PD programs.

3. New Nursing Guidelines Developed: The PD RN Group has worked collaboratively to develop, implement and review over 30 PD-related procedures and policies. The procedures reflect current evidenceinformed practice, which has resulted in the standardization of PD nursing care throughout the province.

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I feel more confident doing my own peritoneal dialysis at home because I know the PD program can see my results at any time. I know that they will let me know if there are any concerns. ~ PD patient, Vancouver General Hospital

Peritoneal Dialysis Registered Nurses (PD RN) Group: What does it do?

Enhances and fosters excellence in the delivery of peritoneal dialysis (home or facility based) as an achievable form of independent dialysis through educational processes and supportive networking.

Web info & resources: BCRenal.ca ⊲ Health Professionals ⊲ Clinical Resources ⊲ Peritoneal Dialysis BCRenal.ca ⊲ Health Professionals ⊲ Clinical Resources ⊲ Peritoneal Dialysis - Rural Remote BCRenal.ca ⊲ Health Info ⊲ Kidney Care Treatments ⊲ Peritoneal Dialysis Resources for Current Patients

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Hemodialysis Tech Group Provides Expertise for Proposal and Contract for Water Treatment Equipment and Services System The Hemodialysis Technical Group is a group

from all health authorities. In partnership

Hemodialysis Technical Group: What does it do?

with BC Renal and PHSA Supply Chain, they

Provides a forum for

developed a provincial request for proposal for

knowledge and experience

the hemodialysis water treatment equipment

sharing for the biomeds,

and services systems.

focusing on:

of biomedical engineers and technicians as well as other biomedical technology leaders

• Their work included: •

playing an active role and providing

Reviewing and discussing the latest clinical evidence

•

Establishing a

technical expertise during proposal review

consolidated provincial

•

helping to select the vendor, and

position vis-à-vis dialysis

•

helping to negotiate the corresponding

equipment vendors

contract.

•

Providing input from a technical and

The Hemodialysis Technical Group will

technological standpoint

continue to be actively involved in the

into the development and

hemodialysis water treatment equipment and

validation of provincial

services systems contract, and performance

clinical standards,

management, particularly through the regular

guidelines and staff

business review meetings with the vendor.

teaching tools

Web info & resources: BCRenal.ca ⊲ Health Professionals ⊲ Clinical Resources ⊲ Hemodialysis

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Dietitians Group Helps Lead Oral Nutrition Supplement Research, Creates New Patient-Led Videos, Helps Transplant Recipients Receive Coverage for Supplements Top 3 Accomplishments: 1. Novel Research Explores Effects Oral Supplements: In collaboration with nephrology researchers, the Dietitians Group is designing and publishing nutrition-related research on the use of oral nutrition supplement in patients with chronic kidney disease. This study, which is being held across BC, is the first of its kind.

2. More Patient-Led Nutrition Videos Available Online: This past year, additional patient-led nutrition videos were added to the BC Renal website. In these videos, patients discuss their experience with nutrition and kidney health, as well as offer tips on how to stay on track with dietary requirements. They also share their favourite recipes, showing how they are able to enjoy their comfort foods more often with simple modifications.

3. Transplant Recipients Receive Coverage for Supplements: BC postkidney transplant recipients now benefit from a coverage plan that includes nutrition supplements, irrespective of their transplant date.

This was a joint effort in collaboration with the Pharmacy & Formulary Committee and the PROMIS Executive Steering Committee.

Dietitians Group: What does it do? •

The group plays a critical role in ensuring patients have access to appropriate, timely and current nutrition education

•

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Members also work to increase renal-specific nutrition research in BC

Meeting other professionals in other areas of practice, such as statistics, informatics and research has enriched our practice as dietitians. It has been an amazing learning experience for me to collaborate with different professionals.

Moving forward, our group would like to continue our research endeavours, increase our media capacity, expand our patient engagement work, and continue to use the BC Renal platform for patient education. ~ Dani Renouf, Member, Dietitians Group

Web info & resources: BCRenal.ca ⊲ Health Info ⊲ Managing My Care ⊲ Diet

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Social Workers Group Creates Numerous Resources for Patients, Advocates for Transportation Improvements, Creates Referral Guidelines for Health Professionals Top 3 Accomplishments: 1. New Self-Management Resources Created for Patients: Co-created by social workers and patients, a new portfolio of resources is now available on the BC Renal website for patients and families. The resources promote self-management, and support in areas such as Caregiver Support, Managing Finances, Mental Health, and more.

2. Transportation Sub-Committee Formed: A newly created transportation sub-committee has formally submitted a resolution to community and provincial partners, which advocates the improvement of transportation infrastructure to ensure patient access to lifesustaining therapies (dialysis).

3. Referral Guidelines Established and Implemented: A selection of guidelines are now available on the BC Renal website for health professionals, which advocate the most appropriate referral and use of social work in kidney care settings.

Social Work Professional Practice Council (Social Workers Group): What does it do? •

Acts as a forum for professional collaboration and champions excellence in the field of nephrology social work

•

Advocates the delivery of evidence-based services for individuals and families living with kidney disease

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People are amazingly complex and nuanced. It is as important to address the bio-psychosocial and emotional needs of patients and families as it is to address their medical needs. We hope that these resources are a step toward achieving that goal. Seeing these resources coalesce and become publicly available has been like crossing the finish line of a very long, very hard-fought marathon. ~ Kristie Ngata, Member, Social Workers Group

Web info & resources: BCRenal.ca ⊲ Health Info ⊲ Managing My Care ⊲ Caregiver Support BCRenal.ca ⊲ Health Info ⊲ Managing My Care ⊲ Managing Finances BCRenal.ca ⊲ Health Info ⊲ Managing My Care ⊲ Mental Health BCRenal.ca ⊲ Health Professionals ⊲ Clinical Resources ⊲ Social Work Support ⊲ When to Refer to Social Work

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ADPKD Advisory Group Helps Launch Funding of Drug, Works on Evaluation, Creates New Resources Top 3 Accomplishments: 1. Funding Initiated for Key ADPKD Drug: Tolvaptan is a drug used to treat ADPKD, but it previously was not available to all British Columbians. In January 2020, BC Renal began funding tolvaptan, making BC the first province in Canada to provide comprehensive public funding for it.

2. ADPKD Group Outlines Evaluation Strategy: The development and implementation of a multi-modal evaluation framework and plan will ensure that the ADPKD Advisory Group can demonstrate its value within the current structure of Kidney Care Clinics.

3. ADPKD Patient Resources Are Launched: The amount of information resources for ADPKD patients is limited. To address this gap, the ADPKD Advisory Group, in collaboration with patients, created several new pamphlets. Some topics include pain, pregnancy and family screening.

Autosomal Dominant Polycystic Kidney Disease (ADPKD) Advisory Group: What does it do? •

Develops standards, guidelines, tools, teaching resources and quality indicators

•

Aligns with Kidney Care Clinic initiatives

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I love the ping pong of ideas. I’ve not only learned a lot, but I feel less alone with a disease that seems endlessly unpredictable. Learning that the daily frustrations aren’t uncommon, and that others are winning the fight, is energizing and empowering. I hope these new resources will help build a trusted, one-stop site for patients who want to take more control of this disease by understanding it better. They should also know they are part of a family bigger than they can imagine, each of us pulling hard for one another. ~ Paul Watson, Patient Partner

Web info & resources: BCRenal.ca ⊲ Health Info ⊲ Kidney Care Treatments ⊲ Polycystic Kidney Disease BCRenal.ca ⊲ Health Professionals ⊲ Clinical Resources ⊲ Polycystic Kidney Disease

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Meaningful Outcomes Over the past 20+ years, BC Renal and our provincial network has made significant progress in improving patient experiences and the delivery of care for people living with kidney disease in BC. Some highlights:

Improving Patient Quality of Life and Outcomes: • BC clinical outcomes data meet or exceed national standards • Highest survival rate in the country • Highest rates of patients on independent dialysis in Canada • Most extensive financial support for renal medications in Canada across 4 pharmacy formularies • PROMIS: BC-wide integrated registry and clinical information system for kidney and transplant patients 58

Engagement Platforms BC Renal website - BCRenal.ca • 60,689 new users • 349,593 pageviews Renal News e-newsletter • 3,290 reads Facebook.com/BCRenal • 1,643 followers • 459,220 impressions @BCRenal • 1,879 followers • 412,700 impressions Youtube.com/BCRenal • 3,130 subscribers • 172,418 views Subscribe to Renal News here: BCRenal.ca ⊲ About ⊲ News & Stories ⊲ Renal News

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BC Renal Phone: 604-875-7340 Email: bcrenal@bcrenal.ca Web: BCRenal.ca

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