Value Judgments in Health Economics Modelling for Primary Care: Towards Patient and Public Partnership in BC

In scientific research, many decisions are needed. Some take scientific expertise, but others take knowing what people find important. Such 'value judgments' include: choosing a topic and how to study it, setting goals, and deciding how to share results.

Patients and the public can inform value judgments in research by being partners and sharing what is most important to them, including

  1. what is most important to know;
  2. what errors are most important to avoid.

This is necessary in health economics, the type of research that looks at health and costs as part of healthcare planning. This project will build on a study that asked health economists about value judgments, including whether and how value judgments in their studies could affect healthcare. In a new project, researchers will start a conversation with patients and the public about the same issue. First, they will create short videos about value judgments in research, including how health economists think about and manage them in their studies. Then, patients and the public who viewed the videos will be asked what they think. Could health economists do a better job of managing value judgments?

The study will help make sure health economics research in BC is clear, understandable, and done in partnership with patients and the public. It will help ensure that British Columbians' values are front and centre in research, including where to focus and how to manage possible errors in studies about healthcare.

Strengthening primary care through population-based research

Primary care includes the day-to-day services provided by family doctors, nurse practitioners, and other health care providers. High quality primary care that follows patients over time and coordinates specialist and hospital care is key to an effective and efficient health care system. Unfortunately, many Canadians struggle to get primary care where and when they need it, despite there being more family doctors per person than ever before.

My research program seeks to answer the following questions:

  1. How can we make sure we have the right number of health care providers to meet the needs of Canadians now and in the future?
  2. How can we efficiently organize delivery of primary care to meet the needs of patients? How do we improve access to effective care for underserved groups, including people managing both mental and physical health conditions and recent immigrants and refugees?

I analyse routinely collected data from health care delivery and look at the impact of policy changes using statistical models. I work in partnership with researchers who have complementary skills collecting information through interviews and focus groups. My research teams include patients, care providers, and people who plan health services.  This helps make sure we ask questions that matter and that research results will help change our health care system.

What are the impacts of being formally enrolled with a GP on continuity and integration of care? Evidence from a comparison of Quebec and British Columbia

MSFHR is providing matching funds to support Kimberlyn McGrail’s and Laurie Goldsmith’s BC-based research activity as part of the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) Network in Primary and Integrated Health Care Innovation (PIHCI) initiative. The BC/Quebec research team was funded through a SPOR PIHCI Provincial/Territorial Comparative Program and Policy Analysis Grant, with additional funding from the University of British Columbia and several Quebec-based institutions and organizations.

The idea behind patient enrolment with a general practitioner (GP) — also called rostering or registration — is that all patients have a family doctor responsible for their care. For some provinces, patient enrolment is a foundation of efforts to make primary health care more accessible, continuous, and of higher quality. Many jurisdictions either have or are considering implementing such programs, with the belief that this can ensure accessible, timely health care for Canadians. To date, little is known about the actual benefits of patient enrolment policies in Canada.

Researchers in two provinces with patient enrolment programs — British Columbia and Quebec — have teamed up to investigate and compare the impact of different approaches to enrollment with a GP on the continuity and integration of care for patients in each province.

Dr. Kimberlyn McGrail, associate professor at the University of British Columbia (UBC) in the School of Population and Public Health, and the Centre for Health Services and Policy Research, is leading the BC team of researchers. The Quebec-based research is led by the project’s overall principal investigator Dr. Erin Strumpf, associate professor in the Department of Economics and the Department of Epidemiology, Biostatistics and Occupational Health at Montreal’s McGill University.

The two-year project brings together patients, health care providers, decision makers and researchers. Researchers will interview patients and family doctors on their experiences and priorities regarding enrolment and will analyze health care data to assess the effects of enrolment policies on health care services use.

The research results will provide insights on the effects of enrolment, including whether it is more effective for some patients than others, with special attention paid to those Canadians who use and need the health care systems most. The resulting evidence will support decision makers in designing and tailoring policies to build patient-oriented, integrated health care and social services systems.

Preclinical development of a disease modifying small molecule therapy for Alzheimer disease

Dr. David Vocadlo is leading 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 a debilitating and progressive neurodegenerative disease, accounting for almost two-thirds of all dementias in Canada, and in BC affects up to 70,000 people. Symptoms include memory loss, behaviour and personality changes, and a decline in cognitive abilities.

Current AD medications treat symptoms of the disease, but none exist that can stop or even slow the progression of AD which starts in the brain many years before it manifests. The need for AD therapies that treat underlying progression of the disease is paramount for the aging population, in particular because of the projected increase in the number of AD patients.

Dr. David Vocadlo, a professor in Chemistry and Molecular Biology & Biochemistry and Canada Research Chair in Chemical Biology at Simon Fraser University (SFU), aims to address several key challenges that would clear the way for a promising new AD therapeutic target.

The two biological hallmarks of Alzheimer's disease in the brain, neurofibrillary tangles and amyloid plaques, are caused by the dysfunction and abnormal accumulation of specific proteins that can kill brain cells over time, progressively impairing brain function.

Vocadlo and a multidisciplinary group of research teams from SFU, the University of British Columbia (UBC) and the University of York in the UK, are pioneering their new approach that has been shown to block disease progression in animal models of AD by blocking the toxicity of the brain proteins that form the tangles within brains. Their approach centres on a specialized sugar unit called O-GlcNAc. Clumps of protein from AD brains have almost none of this sugar attached to them because the O-GlcNAcase enzyme continues to remove this sugar modification.

Vocadlo’s therapeutic goal is to use small molecules to block the activity of the O-GlcNAcase enzyme, and in this way increase the levels of O-GlcNAc in the brain to prevent this protein from clumping together and becoming toxic. Vocadlo’s team is currently advancing this therapeutic target in order to advance it into the clinic.

The impact of opioid agonist treatment on antipsychotic adherence among justice-involved patients in British Columbia

Substance dependence and mental illness frequently co-occur, presenting challenges to treatment providers and increasing the likelihood of suicide, drug overdose, and criminal justice involvement. Assessment and treatment of concurrent disorders (CD) have been identified by police, health professionals, and the Auditor General as urgent priorities in BC, and leadership in the treatment of CD is integral to the mandate of the Provincial Health Services Authority. 

Despite well-documented personal and public risks associated with schizophrenia and opioid dependence, little research has examined the combination of these disorders. Medications, including methadone and antipsychotic drugs, are the first line treatments for patients with these diagnoses. Recent studies, including research conducted in BC, have revealed low levels of adherence to these prescribed medications, leading to increased risks of violence, property crime, and mortality. 

Researchers investigating HIV/AIDS have shown that when opiate dependent patients are adherent to methadone they are also more likely to follow their HIV/AIDS treatment. This research will investigate whether methadone adherence similarly increases adherence to antipsychotic treatment and leads to superior outcomes for patients diagnosed with both disorders. 
 

Game on: Disseminating research for improving hospital dementia care

Co-leads:

  • Habib Chaudhury
    Simon Fraser University
  • Jan Robson
    Alzheimer Society of BC

Trainee:

  • Lillian Hung
    Simon Fraser University

Approximately 40 percent of older people in hospitals have dementia. Research suggests that hospital staff are ill-prepared to provide dementia care. There is an urgent need to increase dementia knowledge among hospital staff because an aging population is giving rise to patients with dementia. A literature review has identified three key challenges in hospital dementia education: (a) staff struggled to find time to attend workshops due to schedules and staffing shortage, (b) managers with tight budgets could not pay for conferences, workshops for staff education and replacement, (c) staff found classroom learning boring and difficult to retain.

To address these challenges, in 2017, the BC Patient Safety & Quality Council funded the development of an online game based on the PhD research findings of Lillian Hung in hospital dementia care. The game development was a collaboration between a team of clinical experts, VCH Learning & Technology, and a game design student at BCIT. Over 70 interdisciplinary VGH staff members participated in PDSA cycles to co-develop the game, called the ART & SCIENCE of Person-Centred Care, showing 10 dementia care approaches applicable in the hospital setting. The game was launched on the LearningHub, an online platform that enables staff in all BC health authorities to have free access, anywhere, anytime.

This project aims to facilitate a wider uptake of research in hospital dementia care by using gamification principles to motivate staff engagement in learning. This project integrates the expertise of researchers (Habib Chaudhury and Lillian Hung), research user co-lead (Jan Robson, Alzheimer Society Provincial Educator), and research users (local experts and decision makers) in BC health authorities — Fraser Health, Providence, Interior Health, Island Health, Northern Health, and Vancouver Coastal Health.

A knowledge translation workshop will bring researchers and research users together to work with a knowledge translation specialist (Lupin Battersby) from the BC SUPPORT Unit and a patient partner (Jim Mann) to co-develop a knowledge translation plan.

In the knowledge translation workshop, the team will:

  • Develop communication tools and key messages.
  • Determine strategies to problem solve local barriers.
  • Agree on knowledge translation processes, products and evaluation plan.

Expected outcomes:

  • An opportunity for provincial cross health authorities collaboration in knowledge dissemination.
  • Improving dementia care through increasing awareness and using the educational game for staff training.
  • Contribution to the science of knowledge-to-action by identifying lessons learned in this innovative project.

#LifeAndLoveWithHIV: A social media initiative to support the sexual health needs of women living with HIV

Co-leads:

  • Angela Kaida
    Simon Fraser University
  • Margarite Sanchez
    Positive Living Society of BC
  • Lori Brotto
    University of British Columbia

Trainee:

  • Allison Carter
    Simon Fraser University

Research on the sexual quality of life for women diagnosed with HIV is gaining momentum. Recent studies in BC and globally show that people with HIV, with undetectable levels of the virus in their blood, have a near-normal life expectancy and effectively no risk of sexual transmission of HIV. This project, #LifeAndLoveWithHIV: A social media initiative to support the sexual health needs of women living with HIV, aims to move this research evidence, along with lived experience perspectives about sexuality and relationships in HIV, directly into the hands of women living with HIV, including those who love and support them, by combining storytelling with online social media and activism.

This inter-disciplinary team of researchers and research users (including women living with HIV and care providers) has been working closely the past seven years to create new knowledge on sexual health and rights of women living with HIV. With support from an SFU Student Social Innovation Seed Grant and a CIHR Knowledge Synthesis Grant, a new open-access resource, www.lifeandlovewithHIV.ca (launched July 2018) was built to share this knowledge with women, partners, care providers, HIV policy makers, and the general public. This Reach award will allow the team to:

  1. Hire and mentor five women living with HIV as feature writers on this online magazine and blog; they will collectively produce 25 blog articles on sexuality and relationships, and be grounded in lived experiences and supported by research evidence.
  2. Implement and evaluate a social marketing initiative to promote uptake of this information, through a collection of YouTube videos, Facebook polls, Instagram images, Twitter parties, and hashtags such as #UntoldDesiresInCanada (which generated >20K impressions).

The dissemination plan includes measuring and evaluating the outcomes of this work. Through this initiative the aim is to reduce HIV stigma, support the sexual health needs of women living with HIV, to not only save, but also improve the quality of, women’s lives.

Novel retinal biomarkers for Alzheimer’s disease

Dr. Faisal Beg is one of five BC researchers 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.

Millions of people worldwide are afflicted with Alzheimer’s disease (AD). In the absence of a complete understanding of the disease, therapeutic trials have been unsuccessful and there remains no cure. Detecting the onset of AD is difficult as the changes in behavior are subtle and hidden. Biomarkers that can reliably detect AD at the earliest possible stage are essential for disease monitoring and treatment to improve the quality of life for patients.

Imaging shows that the brain has a protein called amyloid, which accumulates beyond normal amounts in AD. However, brain imaging exams for amyloid are expensive, can be invasive, and not easily available, and as a result, cannot be used for general screening. Studies suggest that amyloid also accumulates in the retina of individuals with AD, but this has not been proven.

Dr. Faisal Beg, a biomedical engineer and professor in the School of Engineering Science at Simon Fraser University (SFU), is leading a multi-disciplinary team of researchers from SFU, the University of British Columbia (UBC) and McGill University to find the connection between the eye and AD by investigating it as a potential source for the earliest biomarkers for the disease.

The team is developing computational tools and image processing technologies to examine chemical biomarkers, structural degradation, and functional loss in the eye that may be associated with AD. This work could be the basis for a new retina imaging device using laser light that can show the presence of amyloid in the retina. The technology would improve understanding of the disease mechanisms underlying the accumulation and serve as an early indication that the protein is also accumulating in the brain.

Beg’s research could lead to an inexpensive, non-invasive retina exam for use in clinics to screen everyone on a regular basis for the earliest signs of amyloid. Besides having the potential to aid in the early diagnosis of the disease, the imaging techniques may also be able to track the progression of AD and assess the efficacy of treatments under development.

Cellular resolution OCT for clinical ophthalmology

Two of the leading causes of irreversible vision loss in developed countries are age-related macular degeneration (AMD) and diabetic retinopathy (DR). These diseases lead to the death of photoreceptors, the light-sensitive cells in the retina located at the back of the eye.

Treatments are currently available for “wet” AMD and DR, but there are currently no effective treatments for “dry” AMD. The key to preserving sight is early diagnosis, and monitoring the effects of the novel therapies in development.

The current technologies for non-invasive retinal imaging systems include flood illumination fundus photography, confocal scanning laser ophthalmoscopy (SLO) and optical coherence tomography (OCT). The resolution attainable with these techniques doesn’t permit visualization of the photoreceptor mosaic. The limiting factor to this ability is the eyes themselves—the cornea and lens that focus light onto the retina do not have microscopic abilities.

Dr. Sarunic has developed a novel instrument combining wavefront sensorless adaptive optics (SA) with OCT to correct ocular aberrations. This novel SAO OCT can achieve cellular resolution imaging of the retina, visualizing the individual photoreceptors that form a mosaic pattern on the retina (akin to looking at the pixels in a camera). This SAO OCT design is compact and clinically friendly, and with further investigation and commercialization, could lead to improved diagnosis and treatment for those with vision loss.

An advanced wearable robotic exoskeleton for assisting people with lower limb disabilities

Human locomotion is influenced by many factors, including neuromuscular and joint disorders that affect the functionality of joints and can cause partial or complete paralysis. Reduced mobility is estimated to affect over 1.5 million people in the United States alone. Many individuals require mobility assistive technologies to keep up with their daily life, and the demand for these devices increases with age.

A wearable robotic exoskeleton is an external structural mechanism with joints and links corresponding to those of a human body. It is synchronized with the motion of a human body to enhance or support natural body movements. The exoskeleton transmits torques through links to the human joints and augments human strength. 

Dr. Arzanpour has developed a novel wearable robotic exoskeleton for assisting people with lower limb disabilities, such as spinal cord injury patients. The robot is highly versatile and capable of guiding the lower limb joints to perform all normal and complex movements. The technology is light, modular, portable, programmable and relatively inexpensive, and is particularly innovative in its versatile hip, knee and ankle joint mechanism, such that the normal range of motion of the natural joints is preserved.

So far, a proof-of-concept prototype of the proposed lower limb exoskeleton has been fabricated and successfully tested on an anthropomorphic test dummy. With further progress this technology could help people with lower limb disabilities to walk again and greatly improve their quality of life.