Co-developing research priorities for improving palliative care for patients with advanced disease who also experience structural inequities.

Despite experiencing much higher death rates, people living with structural inequities are not adequately served by the current healthcare system, including by palliative care services. As a key provider of healthcare to people living in Vancouver’s Downtown Eastside (DTES), Providence Healthcare’s (PHC) Division of Palliative Care is establishing a research program for equity informed palliative care. The knowledge gained by this program will allow PHC to improve access to and quality of palliative care for patients with advanced disease who also experience structural inequities.

To allow this research program to be truly patient centred, and ensure the experiences and perspectives of all relevant patient populations are prioritised, we will co-develop the research priorities with:
– people with lived experience of palliative care for people experiencing structural inequities (such as family/friend caregivers),
– people experiencing structural inequities who may need palliative care in the future,
– representatives from community-based organisations serving this population, and
– members of the healthcare system.

Clinical impact of 24/7 on-site staff radiologist coverage at a level 1 trauma center in British Columbia

Background: Between 2019 and 2020, the total number of emergency department visits in BC was 1,640,067. On October 1, 2013, Vancouver General Hospital started a program where specialist doctors capable of reading X-ray, ultrasound and computed tomography were available in the hospital around the clock. The mission of this new program was to improve access to diagnostic tests and improve patient care.

 

Methods: A team of physicians, researchers, patients and community partners are collaborating on this research to assess the impact of this new model of service by comparing time it takes for patients to get diagnostic tests, time it takes for reporting these diagnostic tests, patient length of stay in emergency, and the overall cost of care. We will also study if there are any differences in care and outcomes based on sex and race of the patient. We will review consecutive 10 years of the emergency room and radiology department records.

 

Importance: Our research results will help us improve timely patient care, efficiency and conserve hospital resources. The results of our proposed research will provide an example for enhanced and culturally fitting patient care which can be applied to emergency department services throughout Canada.

Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) Network – Phase 2

Health Research BC is providing match funds for Phase 2 of the Network, which is funded by the Canadian Institutes of Health Research’s (CIHR) Strategy for Patient-Oriented Research (SPOR) Networks in Chronic Disease

 

The Can-SOLVE CKD Network is Canada’s largest-ever kidney research initiative. This national partnership of patients, researchers, health care providers, and policy-makers is working to transform treatment and care for Canadians affected by chronic kidney disease.

The network coordinates and conducts innovative research using a patient-oriented approach. During Phase 1 (2016-2023), 18 research teams developed projects seeking to diagnose kidney disease earlier, discover better treatments, and deliver innovative patient-centred care. These projects took many forms: treatment and education interventions, e-health decision aids, and clinical trials testing new therapies.

 

For Phase 2 (2022-2027), the focus shifts to mobilizing these innovations and implementing them into health care policy and practice on a national scale. The goal is to apply this knowledge to clinical practice in order to improve patient care. Can-SOLVE CKD Phase 2 also aims to change the culture of kidney research by strengthening Indigenous cultural competency and equity, diversity, and inclusion (EDI) in health research.

 

Patients have been central to these accomplishments. The network’s Patient Governance Circle has enabled a system in which all research activities are developed collaboratively by patient partners, researchers, and other key stakeholders.

 

In British Columbia, the network is delivering the Kidney Check program. This initiative brings point-of-care screening for chronic kidney disease and its risk factors to rural and remote First Nations communities. Mobile screening technology, including a custom-built iPad app, enables real-time result sharing and the creation of personalized treatment plans. The goal is to support early detection of kidney problems and ensure timely follow-up care. With appropriate treatment, fewer individuals will suffer from kidney failure requiring dialysis, resulting in better health for communities and lower costs for our health care system.

 

The Named Principal Investigator of Can-SOLVE CKD is Dr. Adeera Levin. Dr. Levin is the former president of the International Society of Nephrology and was awarded the Order of Canada in 2015 for her work’s impact on those living with chronic kidney disease. As Senior Medical Lead, Integration Clinical and Academic Networks at Providence Health Care, Dr. Levin has played an important role in facilitating implementation and impacting policy in British Columbia.

Familial hypercholesterolemia patient engagement forum: Family care and women’s health

Familial Hypercholesterolemia (FH) is the most common inherited disorder, with a prevalence of 1 in 250 Canadians, characterized by lifelong elevation in blood cholesterol leading up to 22-fold increased risk for heart disease. Despite this, in BC alone, more than 85 percent of cases are undiagnosed and only a minority receive appropriate treatment. A key component for improving care for this population is by increasing awareness through patient education, engagement and dissemination of recent FH research results. The purpose of this proposal is to organize an updated educational forum on FH, focusing specifically on family-based care and women’s health, including lectures by patients, physicians, dietitians and genetic counsellors, and interactive group sessions including patients’ testimonials. This forum will provide an opportunity for patients to learn about new developments in diagnosis and treatment of FH, including management in special populations, such as pregnant women and children. The goal is to empower patients to become advocates for the FH community by increasing awareness of the disease and recognizing the importance of screening their families for early identification, treatment and ultimately heart disease reduction.


Team members: Iulia Iatan (UBC, Centre for Heart and Lung Innovation); Nancy Pratt-Najera (St. Paul’s Hospital); Lubomira Cermakova (St. Paul’s Hospital, Healthy Heart Program Prevention Clinic); Durhane Wong-Rieger (Canadian Organization for Rare Diseases).

Perioperative stroke screening and outcomes in high-risk surgical patients

Up to two percent of patients will experience a stroke during or after surgery and these patients have a high chance of disability and death. Currently, we don’t understand clearly how to prevent, detect, and treat stroke after surgery. Although risk factors have been identified including older age and cardiac surgery, high risk surgical patients are not usually identified and strokes can be missed, leading to fewer treatment options and more complications. My previous pilot study showed that anesthesia and surgery can limit the accuracy of standard screening tools for stroke. We urgently needed a screening tool and protocol specifically for surgical patients. We also don’t understand well how patients recover after perioperative stroke, such as which patients survive, and whether they can stay in their homes. Building on our prior research, this multiphase study aims to: (1) Understanding which patients do poorly after perioperative stroke and whether those factors can be changed; (2) Compare mortality and other complications after stroke between those who had recent surgery and those who did not; and (3) Identify a useful perioperative stroke screening tool to quickly and accurately detect stroke after surgery.

Redesigning health care for concurrent disorders: The role of multimorbidity in complex co-occurring psychiatric and substance use disorders

Individuals with both psychiatric and substance use disorders, defined as concurrent disorders, are more complex to diagnose and treat due to several interacting health and social challenges. In the absence of appropriate treatment people with concurrent disorders are at high risk for increased morbidity and mortality. A growing body of evidence recommends abandoning the traditional single-disease health model in favour of a multimorbidity approach to care. Despite available evidence, important gaps persist in our understanding of how individual and health system context influence service utilization and outcomes for people with complex multimorbid disorders (e.g. concurrent disorders). The proposed research will establish a prospective cohort of individuals with a concurrent disorder. Individuals will complete a series of brief questionnaires and provide consent to use their personal identifiers for linkage to a number of health databases. This research offers a unique opportunity examine health outcomes associated with multi-morbidities and understand patterns of health care utilization overtime. This research will advance knowledge to inform best practices and service reforms for the optimal delivery of care in BC.

#BePelvicHealthAware: Sharing clinical best practices on pelvic floor health through whiteboard animations, social media and a dedicated website

Co-lead: 

  • Sarah Cockell  
    Providence Health Care Heart Centre

Team members:

  • Manisha Tilak
    UBC
  • Kim Vopni
  • Sarah Munro
    UBC
  • Trish Gipson
  • Adrienne Sim
  • Terry Lee
    Centre for Health Evaluation and Outcome Sciences
  • Nicole Koenig
    UBC
  • Melissa Nelson
    UBC
  • Nicole Prestley Stuart
    UBC / Women's Health Research Institute

The pelvic floor is at the bottom of a woman’s belly and supports vagina, bladder, bowel and womb in their daily functions. It is made of muscles and strong surrounding tissues. Pregnancy, childbirth and the few months after are times of rapid change for the pelvic floor. A woman’s body naturally adapts to pregnancy and tissues are able to stretch, but the baby’s passage through the birth canal can sometimes cause lasting damage to the mother’s pelvic area. This can lead to urine, stool or gas leaking, vaginal bulging, poor body image, loss of vaginal sensation, pain and avoidance of sex. Fifty percent of aging women have pelvic symptoms, which may disappear gradually or last a long time. 

There is a lot of misinformation about this. Women often don’t talk about it because of embarrassment. Our team recently completed grant-funded studies showing that:

  1. Online information is often incorrect
  2. Pregnant women are poorly informed
  3. We can successfully enhance prevention through a workshop

We created animated videos and plan a dedicated website to inform women about how to best care for the pelvic floor in pregnancy and beyond. We aim to to raise awareness of pelvic floor health, prevention and treatment options.
 

Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) Network – Phase 1

Health Research BC is providing match funds for this research project, which is funded by the Canadian Institutes of Health Research’s (CIHR) Strategy for Patient-Oriented Research (SPOR) Networks in Chronic Disease

 

A British Columbia researcher is at the forefront of a coast-to-coast network of patients, health care providers, policy-makers, and researchers working to transform the treatment and care for the four million Canadians living with chronic kidney disease (CKD).

 

Dr. Adeera Levin, head of the division of nephrology at the University of British Columbia (UBC), and head of BC Renal Agency, is co-chairing the Can-SOLVE CKD Network with the University of Calgary’s Dr. Braden Manns and Dr. James Scholey of the University of Toronto. Based at Providence Health Care, Can-SOLVE CKD is Canada’s largest-ever effort to improve care for people with kidney diseases. The five-year initiative aims to reduce the number of people who need dialysis or organ transplants, or who develop debilitating or deadly related illnesses, costing the Canadian health care system more than $50 billion each year.

 

More than 120 investigators from across Canada are participating in 18 research projects based on key issues identified by patients over three years of priority-setting discussions. The projects are organized around three major themes: identifying CKD in high-risk populations; testing new therapies in those with progressive CKD to improve outcomes and quality of life; and determining how best to deliver innovative patient-centered clinical care, ensuring the right patient receives the right treatment at the right time.

 

CKD has a disproportionate impact on vulnerable populations of Indigenous people, children and the elderly and is linked to many chronic conditions including heart disease, diabetes and high blood pressure. The unique needs and perspectives of patients are represented through two governance bodies: a Patient Council and an Indigenous Peoples’ Engagement and Research Council that will guide all activities and decision making.


End of award update: July 2021

Most exciting outputs

One of the best ways to treat kidney disease is to identify it early and take preventative measures to slow disease progression and reduce the need for expensive therapies like dialysis and transplantation. Yet many First Nations communities in rural and remote areas face barriers to adequate kidney health screening and care. Within the Can-SOLVE CKD Network, our Kidney Check program aims to address this problem by supporting First Nations communities to implement local kidney health screening.

 

Using culturally safe practices, trained staff perform point-of-care screening and risk prediction in Indigenous communities. Individuals receive instant feedback on their personal level of risk for kidney disease, high blood pressure, and diabetes. They participate in creating a personal kidney health follow-up plan that may include counselling, treatment recommendations, an appointment with a doctor, or direct referral to a kidney specialist. With correct treatment and continued follow-up, the number of Indigenous people with chronic kidney disease will decline and fewer patients will progress to kidney failure requiring dialysis.

 

Prior to the temporary cessation of screening in March 2020 due to the COVID-19 pandemic, the BC Kidney Check team members screened 133 individuals in 11 communities across the province.

 

Local implementation in BC was supported through a collaboration between 16 First Nations, the First Nations Health Authority, First Nations Leadership, First Nations physicians, nurses, community health directors, Indigenous health care providers, primary care providers, Indigenous patient partners, and nephrologists.

 

Impact so far

As a result of the Kidney Check program, screened individuals determined to be at risk of or living with chronic kidney disease have been referred to nephrologists. Such early intervention has the potential to lower long-term health care costs, and provide these individuals with better health outcomes and quality of life.

 

Potential future influence

Critically, Kidney Check is building capacity in First Nations communities to control their own health care, through general education and real-time access of the kidney health status of individuals. The benefits of this program cannot be quantified by numbers alone. Catherine Turner, Senior Project Coordinator of BC Kidney Check, says, “The service is provided in a culturally safe environment, usually held in the community Health Centre, leading to improved relations as well as a greater trust in the health care system.”

 

Next steps

The Kidney Check team has adapted the screening model to a virtual method in response to the COVID-19 pandemic. Under the virtual model, screening can be conducted by community nurses who are appropriately trained. The Kidney Check team has developed a virtual training program which has already been successfully implemented for several First Nations communities. Using this model, screening will resume in fall 2021 with the project team aiming to eventually screen 1,000 individuals.

 

Useful link

Life at the Margins: Understanding Social Determinants of HIV/AIDS on Women's Health Through Multidisciplinary Translational Research

Vancouver’s Downtown Eastside community has the highest rates of HIV infection and the poorest health outcomes in Canada. Female sex workers in the community are among those at highest risk of infection. The limited success of public health programs and harm reduction interventions in this population reflect the multiple barriers that compromise their access to care. This includes socioeconomic factors such as poverty and unstable housing, the stigma associated with sex work, multiple addictions, and limited autonomy and personal choice. Disease control and harm reduction measures typically focus on individual responsibility, and often do not accommodate for the influences that can increase HIV risk and diminish autonomy among women in the downtown eastside. Susan Berkhout is utilizing an alternative framework developed from contemporary feminist and bioethics literature on ”relational autonomy” in order to more accurately characterize HIV risk behavior, and to produce more effective prevention and treatment strategies aimed at reducing HIV risk among female sex workers. This model considers the socioeconomic and cultural influences, and relationships involved in sex work and injection drug use. The findings should contribute to new harm reduction strategies tailored for this population, provide ethical guidance for researchers working with members of vulnerable populations, and help health care providers enhance autonomy in female sex workers.

The role of Annexin II in airway epithelial wound repair and the effect of corticosteroids on the Annexin II regulated pathway

Asthma is an inflammatory condition of the lungs that affects a growing number of individuals in developed countries worldwide. Current research and therapies for asthma are aimed at relieving the symptoms associated with the disease rather than the underlying defect. In spite of the use of anti-inflammatory agents, asthmatics experience progressive changes in airway structure and cumulative damage to the cells that line the airways (epithelium). The accumulation of damage due to ineffective repair may in part explain the airway’s hyperresponsiveness in asthma and highlights the importance of effective epithelial repair. Ben Patchell seeks to identify molecules that normally contribute to the process of epithelial repair and apply these findings to diseases such as asthma. Specifically, he is studying glycosylation, a process in which certain molecules gain sugars to become fully functional. Glycosylation has previously been shown to be essential in the repair of normal airway cells and there are demonstrated differences between the cells of normal and asthmatic individuals. Ben has developed a method to identify the unknown protein molecules responsible for these differences. Annexin II has been identified as a novel mediator of epithelial repair and has been demonstrated on the surface of airway epithelial cells. Ben is exploring how Annexin II and its associated proteins are regulated and the mechanisms by which they regulate cellular events such as migration in both normal and asthmatic epithelium. He is also investigating the effect of steroids, the primary therapy for asthma, on each of the cellular events. This research could lead to new research strategies and new therapeutics for asthma.