Silent genomes: Reducing health care disparities and improving diagnostic success for children with genetic diseases from Indigenous populations

Health Research BC is providing match funds for this research project, which is funded by the Genome Canada/CIHR Large-Scale Applied Research Project (LSARP): Genomics and Precision Health funding opportunity. Additional support is provided by Genome BC, the BC Children’s Hospital Foundation, BC Provincial Services Health Authority and the University of British Columbia (UBC).

 

Indigenous populations in Canada and around the world face unique health challenges, inequities, and barriers to healthcare. As a result, they typically have poorer health outcomes than non-Indigenous groups.

 

The health disparity gap widens when it comes to Indigenous populations’ access to the technology and research involved in genomics – the study of the complete set of human genes – which have advanced health care by allowing medical treatments to be tailored to the specific needs of individual patients through precision medicine, routinely available to other Canadians.

 

Dr. Laura Arbour, a clinical geneticist at BC Children’s Hospital and Island Health, and a professor in UBC’s Department of Medical Genetics, is working to address the growing genomic divide – particularly the lack of background genetic variation data for Indigenous populations – through the Silent Genomes project. The four-year project aims to improve health outcomes by reducing health disparities, enhancing equitable access to diagnosis, treatment, and care for Indigenous children with genetic diseases. Arbour is joined on the project by the University of Northern British Columbia’s Dr. Nadine Caron, and Dr. Wyeth Wasserman from UBC and the BC Children’s Hospital Research Institute, where the research will be conducted, along with BC Women’s Hospital + Health Centre.

 

The Silent Genomes research team will work with First Nations, Inuit and Métis partners across Canada to establish processes for Indigenous-led governance of biological samples and genome data, leading to policy guidelines and best practice models for genomic research and clinical care.

 

The project will also create an Indigenous Background Variant Library (IBVL) of genetic variation from a pool of 1,500 First Nations Canadians that will improve the accuracy of genomic diagnosis by providing necessary reference data for Indigenous populations living in Canada and globally. Researchers will also assess the effectiveness of the IBVL to lower health care costs, and plan for long-term use of the IBVL for Canadian Indigenous children and adults needing genetic/genomic health care.

Seniors Adding Life to Years (SALTY)

Health Research BC is providing match funds for this research project, which is funded by CIHR’s Team Operating Grant: Late Life Issues. Additional support is provided by Nova Scotia Health Research Foundation, Alberta Innovates Health Solutions and Alzheimer Society of Canada.

 

Late life is a time when older adults and their caregivers face health and social issues that can impact their well-being. Everyone wants to live well in their final years, but this may be a challenge, particularly for people living in residential long-term care (LTC) settings.

 

A multi-disciplinary, multi-sectoral team of researchers, care providers, administrators, policy makers and older adults and their families from across Canada have come together to better understand how to add quality to years in the last phase of life for people in residential care and their caregivers. Seniors-Adding Life To Years (SALTY) is a four-year research project that will evaluate promising programs, practices and policies currently employed in four provinces – British Columbia, Alberta, Ontario and Nova Scotia – to support change in how decision makers and practitioners provide care and support in long-term care across the country.

 

Led by professor Janice Keefe at Mount Saint Vincent University and director of the Nova Scotia Centre on Aging, the study team will develop innovative strategies to understand and assess the impact of existing programs on quality of care and quality of life, with the goal of rolling out effective approaches in jurisdictions across Canada.

 

SALTY’s research program is organized in four interrelated research streams or problem areas, each applying a different perspective to the late-life trajectory in LTC. Dr. Kelli Stajduhar, of the University of Victoria’s (UVIC) School of Nursing and Institute on Aging and Lifelong Health is co-leading one of the streams. Stajduhar is joined by Drs. Denise Cloutier, also with the Centre of aging and UVIC’s department of geography, and Leah MacDonald, medical director of Island Health’s End-of-Life program. The BC research team is evaluating an implementation project entitled “Improving End-of-Life Outcomes in Residential Care” taking place in four Vancouver Island LTC homes. The goal of the implementation project is to facilitate a promising palliative approach in the context of care provided in LTC facilities for people with life-limiting conditions. Additionally, the team’s evaluation will provide evidence to support application of the project in other provinces.

Locally produced brain insulin in memory and Alzheimer’s disease: A multi-disciplinary approach to a key question

Dr. James Johnson is one of five BC researchers leading teams supported through the British Columbia Alzheimer’s Research Award. Established in 2013 by the Michael Smith Foundation for Health Research (MSFHR), Genome British Columbia (Genome BC), The Pacific Alzheimer Research Foundation (PARF) and Brain Canada, the goal of the $7.5 million fund is to discover the causes of and seek innovative treatments for Alzheimer’s disease and related dementias.

 

Alzheimer’s disease (AD) – the most common form of dementia – is a fatal, progressive and degenerative disease that destroys brain cells, causing thinking ability and memory to deteriorate.

 

One percent of AD is the early-onset type that runs in families. While extensive studies of these forms of the disease have revealed the genes that cause them, the most common, late-onset forms of AD are understudied and poorly understood at the level required for therapeutic intervention.

 

Studies have shown links between Alzheimer’s disease and obesity, altered fat metabolism, insulin and diabetes, with diabetes increasing the risk of suffering from AD by 30-65 percent. Scientists have also found the brain produces a small amount of insulin with reduced levels in the brains of AD sufferers. While the function of brain insulin is a mystery, evidence suggests reduced brain insulin could play a role in Alzheimer’s disease.

 

Dr. James Johnson, a professor in the Departments of Cellular and Physiological Sciences and Surgery at the University of British Columbia (UBC), further found in preliminary studies that high-fat diets reduced brain insulin production. The goal of Johnson’s continuing research is to answer the key question: is the loss of brain insulin alone enough to cause cognitive impairment? Johnson will test the hypothesis that brain-produced insulin is a critical factor for the survival and function of brain cells in the context of both a genetic change that increases Alzheimer’s risk and a diet that increases Alzheimer’s risk. Using mice models lacking brain insulin, Johnson’s team will assess their ability to learn and study how their brains are reprogrammed. Insulin will be correlated with Alzheimer’s-like changes in human brains.

 

Information on the role and mechanisms of brain insulin through Johnson’s pioneering research has the potential to advance understanding of AD and contribute to an eventual cure. Identifying the link between diet, insulin and Alzheimer’s disease could also enable earlier diagnosis and inform strategies for Alzheimer’s prevention. Furthermore, the findings may shed light on much-needed new drug targets for Alzheimer’s disease or possibly re-purposing existing diabetes drugs.

Diabetic retinopathy screening – National tele-ophthalmology

MSFHR is providing matching funds to support the research of Dr. David Maberley as part of Diabetes Action Canada, one of five national chronic disease networks established through the Canadian Institutes of Health Research’s (CIHR) Strategy for Patient-Oriented Research (SPOR) Networks in Chronic Disease, connecting researchers, health professionals, policy-makers, and patients across the country. MSFHR has committed funding over five years to support Diabetes Action Canada and the BC-based research activities of two other networks: Can-SOLVE CKD and CHILD-BRIGHT.

Diabetes is considered a global epidemic. By 2025, over 12 percent of the Canadian population will live with diabetes. Diabetes can damage the back of the eye (retina) causing swelling, bleeding and scarring which can lead to deterioration and loss of eyesight. Diabetic Retinopathy (DR) is a serious complication of diabetes and the leading cause of blindness in adults under 60 years of age. It is asymptomatic in the early stage, but can quickly progress to more advanced stages, and if left untreated, can lead to severe vision loss, and even blindness. Almost all people with Type-1 diabetes and more than 60 per cent of those with Type-2 develop some form of retinopathy in the first two decades after a diabetes diagnosis. In Canada, the rate of diabetic retinopathy is about 40 per cent higher in First Nations communities compared to the general population.

Early detection of DR, through regular screening of the retina, is an effective method of avoiding vision loss from diabetes. There are effective therapies that can prevent visual loss and slow the progression of the damage if detected early. Therefore, it is critical to screen all people living with diabetes for early or more advanced diabetic retinopathy.

Dr. David Maberley, head of the Department of Ophthalmology and Visual Sciences at the University of British Columbia (UBC), is co-leading a national retinopathy screening program for the early diagnosis and management of DR with Dr. Michael Brent from the University of Toronto. Maberley’s research is a component of Diabetes Action Canada – the first and only nation-wide collaborative network of clinicians, researchers, disease associations, industry and government in partnership with people living with diabetes – focused on the prevention of diabetes complications.

The focus of Maberley’s BC research is to evaluate a DR screening site in Vancouver’s Downtown East Side and in remote First Nation communities. These sites will provide a model for community-based screening to improve care for patients with diabetic retinopathy living in remote and under-served areas of BC. Diagnostic nodes will be established in several rural hospitals and equipped with optical coherence tomography (OCT) cameras using new software for automated retina image data capture, transfer and analysis to detect retinal degeneration before symptoms emerge. As well, two travelling screening cameras will serve remote communities. These advanced imaging procedures will allow for the segmentation of patients according to risk, for treatment and follow-up care. For patients, availability of DR screening closer to where they live means they only have to make trips to the larger centres when treatment is actually needed.

Maberley’s team will also explore the use of artificial intelligence (AI) to allow images from OCT cameras across the country to be analyzed instantly to determine the need for treatment at an advanced centre, and inform clinicians on the course of treatment. Another component is the development of an app to assist patients with managing their eye care.

New advancements in imaging technology will enhance the ability to identify the full spectrum of diabetes-related retinal disease and allow for detection and intervention at earlier stages in the disease process. Maberley’s research will support Diabetes Action Canada’s goal to develop a national DR assessment program and patient registry to facilitate clinical trials of new diagnostic methods and more effective treatments, accessible to all Canadians with diabetes, ultimately transforming health outcomes, with few people losing their vision as a result of their diabetes.

CHILD-BRIGHT: Child Health Initiatives Limiting Disability – Brain Research Improving Growth and Health Trajectories

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

 

As many as 850,000 children in Canada are living with a brain-based developmental disability (BDD). They face lifelong challenges with mobility, language, learning, socialization and self-care, which impacts their quality of life and create special challenges for their families. They also typically have poorer health, lower educational achievement, fewer economic opportunities and higher rates of poverty than children without disabilities.

 

CHILD-BRIGHT is a pan-Canadian network of clinicians, patients, families and scientists committed to making the future brighter for infants, children and youth with lifelong brain-based developmental disabilities and their families. The five-year project focuses on those diagnosed with a brain-based disorder such as autism, cerebral palsy, fetal alcohol spectrum disorder, learning or intellectual disabilities, as well as those at high risk for a brain-based developmental disability due to pre-term delivery, congenital heart disease, or genetic anomalies.

 

Dr. Dan Goldowitz, a professor of Medical Genetics at UBC and the Centre for Molecular Medicine and Therapeutics at the BC Children’s Hospital Research Institute, is one of CHILD-BRIGHT’s three co-directors, along with Drs. Steven Miller at University of Toronto/The Hospital for Sick Children (SickKids), and Network Director Annette Majnemer of McGill University Health Centre’s Research Institute.

 

CHILD-BRIGHT’S 12 patient-oriented research projects fall under three themes: “Bright Beginnings” – innovative early therapies to optimize brain and developmental outcomes; “Bright Supports” – integrating mental health and wellness support into care for children and youth, and “Bright Futures” – re-designing key parts of health care services to be more responsive to family needs, throughout the trajectory of the child’s and the family’s development.

 

Goldowitz is overseeing the network’s training program. His UBC team will engage with patients, researchers and policy-makers to foster a culture of patient-oriented research that could help serve as a model for future health research and lead to better outcomes for patients and their families.

 


 

End of Award Update: May 2022

 

Results

Training Program – CHILD-BRIGHT’s Training Program has worked to develop capacity in patient-oriented research (POR) to ensure that authentic patient-partner engagement is fundamental to the research process. To this end, regular training offerings such as webinars, workshops, and self-directed modules, have been critical. However, initiatives that strive towards changing the research culture around POR will have a far lasting impact. For instance, the Summer Studentship Training Program exposes undergraduate students to the core tenets of POR while providing opportunities to gain practical experience within a CHILDBRIGHT research project. Funding initiatives such as the “Graduate Student Fellowship in POR” provides support to graduate trainees or postdoctoral fellows to augment a research project to involve the patient-partner voice. Together, outputs like this help create capacity for POR in tomorrow’s research leaders.

 

Parent-EPIQ – In the Parent-EPIQ studies, we found that we need to revise how we talk about the futures of children born very preterm. Parents want a broader perspective with positive and negative outcomes including functioning, quality of life and family wellbeing. We also successfully implemented interventions to improve language abilities in children born preterm using the proven EPIQ quality improvement technique with parent involvement. Lastly, we provided up to date Canadian information for parents and health care providers in four annual reports.

 

IMAGINE – This project has determined that approximately half of children affected with symptoms of atypical cerebral palsy can be provided with a genetic diagnosis when trio whole genome sequencing is used. We also determined that trio whole genome sequencing is superior in diagnostic power to the currently used clinical exome sequencing. Bioinformatics pipelines were created to optimize diagnoses via these whole genome methods. These have been presented and published or are in press. Several patient-facing tools were developed for this project, in conjunction with parent-partners associated with the project. All were well accepted and appreciated, which supports the advantages of parent partner involvement.

 

PIUO – Many infants, children and youth with rare diseases and complex conditions affecting the central nervous system often experience pain and irritability. Sometimes the pain is due to medical procedures such as scoliosis repairs, or due to chronic conditions such as muscle spasms. There are, however, many times when it is difficult to find a source as these children often have severe language delays. Engaging clinicians in assessing and treating PIUO using history, physical examinations, diagnostic tests, and screens to rule out unknown causes of indeterminate pain has influenced the way this issue is being treated clinically. The pathway also provides support and guidance for parents of these children.

 

 

 

 

Impact

Parent-EPIQ – As a result of the Parent-EPIQ project, our work has highlighted what parents view as important: functioning, quality of life and family well-being. These areas are not currently captured in data collection as part of the Canadian Neonatal Follow Up Network. This major impact of work has been taking steps to shift the paradigm of reported outcomes in neonatal follow up research using these findings through changes to our annual report and data collection, implementing recommendations from parents of preterm children, and considering parent perspectives when reviewing and evaluating data requests and future research.

 

IMAGINE – The results of this project have provided a diagnosis to families who previously had no etiology for their child or children’s problems. This has provided an explanation for these families, and in many cases genetic counseling has provided information on the trajectory of the illness, risk to other family members and to future pregnancies. An understanding of etiology enables treatment options to be considered. One of the patient-facing tools, the Genomic Results Booklet, has been tested in clinical usage in the BC Children’s Hospital Pediatric Neurology. This clinic has seen the importance and advantages of providing post-testing information in this format. A research paper is currently under development that describes the impact of this tool in clinical use.

 

PIUO – Many infants, children and youth with rare diseases and complex conditions affecting the central nervous system often experience pain and irritability. Sometimes the pain is due to medical procedures such as scoliosis repairs, or due to chronic conditions such as muscle spasms. There are, however, many times when it is difficult to find a source as these children often have severe language delays. Engaging clinicians in assessing and treating PIUO using history, physical examinations, diagnostic tests and screens to rule out unknown causes of indeterminate pain has influenced the way this issue is being treated clinically. The pathway also provides support and guidance for parents of these children.

 

 

Potential Influence

Parent-EPIQ – We have leveraged powerful partnerships with parents and collaborations with advocacy groups to co-create resources and materials that directly reach families. Not only have we been able to disseminate our research findings through traditional academic publications, but we have pursued innovative and novel avenues to benefit more families and more children born preterm which is the ultimate objective of our work. Our research is being noticed. PI Dr. Synnes was invited to present results in Seoul, Korea and virtually to Boston Children’s Hospital in the fall of 2023.

 

IMAGINE – This project has provided evidence for the efficacy of the diagnostic and clinical care used: (1) approach of whole genome sequencing (2) bioinformatics pipeline, and (3) has demonstrated the advantages of parent involvement throughout. We hope that the presentations and academic papers produced will provide a framework for best practices for similar families.

 

PIUO – Our co-investigators were invited to speak in Prince George’s Northern University Hospital, and locally in several outreach clinics and hospital rounds about our pain pathway protocol. Our wider impact via the academic literature remains to be determined as we await statistical analysis for write up in research journals.

 

 

Next Steps

Parent-EPIQ – In this work, we have identified specific assessment tools to measure parent-identified outcomes. Future research will involve the feasibility of implementing these tools into routine data collection as part of the Canadian Neonatal Follow Up Network. The next steps will include leveraging the success of the CHILD-BRIGHT Phase 1 Parent-EPIQ project to start work on the CHILD-BRIGHT Phase 2 project: “Implementing Patient-Reported Outcome Measures (PROMs) in follow-up care of preterm children using a hybrid implementation-effectiveness design”.

 

IMAGINE – Our next steps include efforts towards knowledge mobilization and implementation science to identify how best to integrate what we have learned in this study into clinical practice. Future research will continue to finesse bioinformatics methods and re-examination of as-yet undiagnosed children. We are working on challenging variants that include complex sequence repeats and rearrangements.

 

PIUO – Our next steps will be to complete data analysis and use the results to inform an implementation science project as part of CHILD-BRIGHT Phase 2, which will allow our team to expand the pain pathway to pediatricians across BC.

Validation of connexins and pannexins as a target for Alzheimer’s disease

Dr. Christian Naus is one of five BC researchers leading teams supported through the British Columbia Alzheimer’s Research Award. Established in 2013 by the Michael Smith Foundation for Health Research (MSFHR), Genome British Columbia (Genome BC), The Pacific Alzheimer Research Foundation (PARF) and Brain Canada, the goal of the $7.5 million fund is to discover the causes of and seek innovative treatments for Alzheimer’s disease and related dementias.

 

Alzheimer’s disease (AD) is the most common form of dementia, accounting for almost two thirds of total cases. There are currently no successful treatments, making the discovery of effective therapeutic interventions critical.

 

The brain contains billions of neurons (nerve cells), and substantially more non-neuronal cells called glia. Astrocytes, the most abundant type of glial cells, closely interact with neurons to control the transmission of electrical impulses within the brain. The major disease hallmark of AD is cognitive decline linked to neuronal wasting, impairment and finally, death.

 

Dr. Christian Naus, a professor in the Department of Cellular and Physiological Sciences at the University of British Columbia (UBC) and Canada Research Chair in Gap Junctions and Neurological Disease, studies the molecular and cellular mechanisms by which astrocytes lose their ability to support neurons that are vulnerable to destruction in Alzheimer’s disease, with the aim to identify new drugs to aid in treatment.

 

Naus’ team examines a unique set of cellular channels in astrocytes and neurons formed by special proteins, called connexins and pannexins. These channels help control the environment in which the cells of the brain must function by allowing a variety of small molecules to pass freely from one cell to another, and allowing them to coordinate cellular responses to various signals. However, when these channels stop working properly, they can become damaging to the environment thus compromising the normal functions of neurons. Naus’ research explores the role of these channels in neurons and astrocytes in order to identify how to manipulate these channels to provide protection for neurons in cases of disease, such as AD.

 

The outcome of these studies will contribute to the potential identification and development of new drugs that will not only target neurons, but also enhance the ability of astrocytes to protect neurons that are vulnerable to cell death in AD.

Implementing land-based resiliency in First Nations youth: The ‘This is Who We Are’ Program

Health Research BC is providing match funds for this research project, which is funded by CIHR’s Pathways to Health Equity for Aboriginal Peoples. Additional support is provided by Fraser Health Authority and Vancouver Coastal Health.

 

Suicide among Aboriginal youth – estimated to be five to six times higher than non-Aboriginal youth – has been occurring at an alarming rate in recent years.

 

Dr. Adrienne Chan, Associate Vice-President of Research, Engagement and Graduate studies at the University of the Fraser Valley, is leading a team of researchers working on a suicide prevention strategy targeted to First Nations youth. Implementing Land-Based Resiliency in First Nations Youth: The ‘This is Who We Are’ Program, continues Chan’s earlier work with the Seabird Island Band – part of the Stó:lõ Nation, in the Upper Fraser Valley – which explored the benefits and positive outcomes of reconnecting Aboriginal youth to the land to build resiliency that comes from a foundation of culture, community and place.

 

The work of Chan’s team over three years will be grounded in an Indigenous research approach to examine the implementation of a suicide prevention program in four new communities: Mission Friendship Centre, Sumas First Nation, Scowlitz First Nation, located within Stó:lõ territory, and Nuxalk Nation (Bella Coola). The focus is on primary prevention of suicide: promotion of health, community connection, building and maintaining culture and family resilience.

 

Drawing on Indigenous ways of knowing as they are lived in the four communities, a guiding group of elders, youth and community members will inform the research team on how to adapt the pilot land-based resiliency program to the individual aspects of each community.

 

Youth will be instrumental in telling their stories, identifying needs, and providing input on how the prevention program unfolds. They will also be engaged in forums and participate in land-based (traditional land use and land stewardship) activities to explore and connect with their culture – past, present and future, as an act of healing and empowerment.

 

Community agencies working with children, youth, and families as well as health authorities will be involved to ensure a comprehensive perspective on what makes implementation of the resiliency model successful. Ongoing collaboration, knowledge seeking and knowledge exchange will allow for lessons about implementation to be shared between communities and to identify opportunities for broader expansion of the program.

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

BC’s Primary Health Care Research Network – Phase 1

Health Research BC is providing match funds for this research project, which is funded by CIHR’s Strategy for Patient Oriented Research (SPOR) Primary and Integrated Health Care Innovations (PIHCI) Network initiative. 

 

BC’s Primary Health Care Research Network (BC-PHCRN) was launched in November 2013, and is one of 11 networks across Canada that have an initial focus on individuals with complex health needs for whom integrated care is critical to improve patient experience and health, health equity, and health system outcomes.

 

The BC-PHCRN is designed to support evidence-informed transformation of the delivery of primary and integrated health care, and its goal is to encourage, facilitate, and support collaborations between government, health authorities, health professionals, patients and researchers. The BC-PHCRN aims to seek out, develop, and facilitate adoption of health care innovations to improve BC’s health care delivery system.

 

As part of our work, the BC-PHCRN supports the Canadian Primary Care Sentinel Surveillance Network (CPCSSN), Canada’s first and only multi-disease electronic record surveillance system. CPCSSN is a multi-faceted tool, providing users with:

  • Data for development and effective evaluation of Primary Care Networks and Patient Medical Homes.
  • Quality improvement dashboard for physicians and other clinicians.
  • Chronic disease surveillance across the clinic, provincial and national levels.
  • The ability to support crucial primary care research in BC and in Canada.

The BC-PHCRN is led by a Tripartite Leadership, including the Science Lead, Dr. Sabrina Wong, Clinical co-Leads Drs. Fiona Duncan and Anne Junker, and Policy co-Leads, Shana Ooms and Heather Davidson.

TEC4Home: Telehealth for Emergency-Community Continuity of Care Connectivity via Home telemonitoring

Health Research BC is providing match funds for this research project, which is funded by CIHR’s eHealth Innovation Partnership Program (eHIPP). Additional support is provided by the BC Ministry of Health and TELUS Health.

 

Health care for seniors can be challenging, especially for those with chronic illnesses like heart failure which is the third leading cause of hospital stays. After discharge, seniors are often vulnerable to their condition deteriorating, with one of four returning to hospital within one month of an emergency department visit or hospital stay.

 

Telehealth for Emergency-Community Continuity of Care Connectivity via Home-Telemonitoring (TEC4Home), is evaluating how home telemonitoring may improve care and increase patient safety during the transition from the emergency department to community care at home, and further, how it is best implemented to support patients with heart failure.

 

TEC4Home is led by Dr. Kendall Ho, a professor in the Department of Emergency Medicine at the University of British Columbia and an emergency department physician at Vancouver General Hospital. The aim is to improve patient outcomes and quality of life by reducing the number of emergency department revisits, hospitalizations and length of stay.

 

Patients enrolled in the TEC4Home project can monitor their health from the comfort of their homes and share information electronically with their physicians and health care providers. Using monitoring technology provided by TELUS Health, patients measure their own weight, blood pressure, pulse, and oxygen saturation daily over a 60-day period. The data is automatically sent to a TEC4Home monitoring nurse who can follow up as required.

 

Over the four years of the project, Ho’s team will conduct a number of studies and trials involving patients recruited from emergency departments and several health authorities across BC. Ho’s research is expected to inform the use and expansion of the home monitoring approach throughout BC and Canada and to other chronic diseases.

 

The use of technology like TEC4Home for patient self-management and monitoring of chronic illnesses can empower patients to become active participants in their care and recovery. Additionally, there is the potential to improve the quality of health care delivery and reduce health care costs while freeing up resources and hospital beds for other patients.

 

In 2017, Ho received an MSFHR Health Professional-Investigator Award related to this project.