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


  • Sarah Cockell  
    Providence Health Care Heart Centre

Team members:

  • Manisha Tilak
  • Kim Vopni
  • Sarah Munro
  • Trish Gipson
  • Adrienne Sim
  • Terry Lee
    Centre for Health Evaluation and Outcome Sciences
  • Nicole Koenig
  • Melissa Nelson
  • 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.

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

MSFHR is providing matching funds to support the research of Dr. Adeera Levin, as part of the Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) Network, one of five national chronic disease networks established through the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) Networks in Chronic Disease, connecting researchers, health professionals, policy-makers, and patients across the country.

Continue reading “The Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) Network”

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.

An examination of injection drug use sites: the influence of social and physical context on drug-related harms and public health interventions

Injection drug use may result in severe health consequences including increased risk of viral infections such as HIV and hepatitis C, soft tissue infections, and drug overdose. Recently, with increasing attention being paid to the impact of environment on individual and public health, intervention efforts for injection drug users (IDUs) have moved beyond the modification of individual behaviour and focused on modifying the environments in which people use injection drugs. One recent and controversial example of this involves medically supervised injection facilities, where IDUs can inject pre-obtained illicit drugs under the supervision of health care professionals. William Small is studying and comparing three types of injecting settings in the Downtown Eastside: private injecting spaces (such as homes), public injecting spaces (such as alleys), and Vancouver’s supervised injecting facility. He is examining how the social and physical context of each setting influences the ability of injection drug users to employ HIV-prevention measures and safer injection practices. The findings of this research will build important knowledge about the health and HIV vulnerabilities of IDUs in the Downtown Eastside. Also, this research will provide information on the impact of current interventions, which may inform future interventions for addressing injection drug use.

Genetic determinants of the host response to infection in critically ill adults with systemic inflammatory response syndrome

Each year in Canada about 100,000 people develop sepsis—a severe illness caused by the presence of bacteria in the bloodstream. The condition causes blood pressure to drop, resulting in shock and may lead to multiple organ dysfunction and eventually death. With a mortality rate of 30 and 65 per cent respectively, sepsis and septic shock cause more deaths annually than heart attacks. Inflammation and immune response to infection varies greatly between patients. Some inflammation is a normal defense against infection. However, if inflammation is excessive, white blood cells and other cells can spill into the circulatory system and damage healthy organs. Continuing her previous MSFHR-funded research, Ainsley Sutherland is studying whether the genes that recognize bacteria and viruses play a role in determining which patients will develop the excessive inflammation that can lead to sepsis. This understanding could lead to the development of drug therapies for patients at higher risk of sepsis, and the avoidance of unnecessary drug side effects in patients who are not at risk.

To Each Her Own: Sex Work Typologies, Intimate Relationships, and their Impact on HIV Risk for Female Sex Workers in Vancouver's Downtown Eastside

The estimated 1,000 female sex workers in Vancouver’s Downtown Eastside (DTES) live in Canada’s poorest neighbourhood, characterized by deplorable housing conditions and high rates of hepatitis C and HIV infections. HIV prevalence is an alarming 26 per cent, according to a recent study of 198 female sex workers in the DTES. Although violence, poverty and social marginalization have been identified as putting these women at risk, we know very little about two of the defining issues that characterize sex work and make these women vulnerable to HIV: types of sex workers, and the intimate relationships women form with boyfriends and regular clients. Treena Orchard is exploring whether there is a link between a particular type of sex worker and relationship structure that places certain groups of women at greater risk for HIV infection. Her hypothesis is that women with an established sex work status are more likely to form lasting relationships and avoid high-risk sexual practices. Treena’s research is examining how different types of sex workers are identified and organized, and how these women construct and attach meaning to their intimate relationships, especially in relation to the issues of sexuality, health and trust. This study will use individual interviews, focus groups and social mapping to determine the broader social processes and health determinants that structure the HIV risk of these female sex workers. Examining the social organization of sex work and relationships in this context is critical to improving the women’s health status and developing HIV prevention programs that are population and gender-specific. As one of the few qualitative studies to address these issues among Canadian sex workers, this research will be relevant to other researchers, health authorities and – through their participation – the women themselves.

Examining the complex role of social, environmental and structural factors as barriers and facilitators for HIV risk and prevention among substance-using women in survival sex work.

Women engaged in survival sex work in Vancouver’s Downtown Eastside (DTES) face multiple vulnerabilities that directly enhance their risk of HIV transmission, including entrenched poverty, homelessness, repeated episodes of violence and assault, substance abuse, and social marginalization. In addition, the illegal, clandestine and largely unregulated nature of sex trade work in Canadian cities increasingly pushes street-entrenched women to the outskirts of society, limiting their means to protect themselves and access to supportive health services. Despite increasing evidence of gender differentials in new HIV infections facing women – particularly youth and women of Aboriginal ancestry – and extensive harm reduction and public health efforts focusing on illicit drug use in this community, little information exists about the complex social, environmental and structural factors that facilitate prevention, harm reduction practices, and access to care. Kate Shannon’s research will use participatory-action research methodologies to explore the social and environmental barriers and facilitators to HIV prevention among survival sex workers. While several individual factors have been shown to elevate HIV and STI (sexually transmitted infection) risk among female substance users in this setting, far less attention has been paid to the role of social and structural violence and power relations in facilitating HIV risk through both sexual and drug use pathways. Using social mapping, focus group discussions and interview-questionnaires, Kate’s research will aim to demonstrate the social and environmental factors that mitigate the HIV risk environment of survival sex workers, and in particular, the role of violence and power relations in the negotiation of HIV prevention behaviours among drug-addicted women and their intimate and working partners This research will provide valuable information about a population that has remained largely on the periphery of public health and harm reduction strategies and services. It is anticipated that the research will also foster capacity building among survival sex workers and help inform evidence-based policy and practice tailored to this population.