Improving Mental Health Act rights advice communications and practices

Co-leads:

  • Kimberly Miller
    Simon Fraser University
  • Vanessa Bland 
    Vancouver Coastal Health

Team members:

  • Sandra Dawson 
    Patient partner
  • Laura Johnston
    Community Legal Assistance Society
  • Erin Michalak
    University of British Columbia
  • Jessica Wang 
    Patient partner

Trainee:

  • Iva Cheung 
    PhD student

Under the provincial Mental Health Act, patients involuntarily hospitalized for a mental disorder must be informed of their rights upon admission. But in a 2011 survey of short-stay mental health patients, 43 percent of respondents said they were not explained their rights in an understandable way. Qualitative research by Iva Cheung suggests this gap may be due to inconsistent rights-advice practices and an ineffective communication tool.

Clinicians use a statutory form to give rights advice to involuntary patients, but user testing of this form with people with lived experience has uncovered weaknesses in the document, from the patient’s perspective, as a communication tool.

With this award, the research team aims to apply evidence from that user testing to create a new suite of rights-advice communication tools and a training program for clinicians to implement these tools. Two patient partners on the team will co-create the communications, which will be user tested with people with lived experience, to make them as clear and useful to patients as possible. The team’s research user co-lead, an experienced resource nurse with a mentorship role and access to 11 psychiatric units, will contribute her knowledge of rights-advice practices and clinical workflows to ensure that the tools will be practical to use in hospital settings. The legal expert on the team will review the tools for legal accuracy.

The research user co-lead will champion this research in her workplace and help develop an interactive training program for clinicians who give rights advice. This training will

  • Introduce the new communication tools.
  • Emphasize the importance and potential therapeutic benefits of rights advice.
  • Refresh clinicians’ knowledge of salient parts of the Mental Health Act.
  • Support clinicians in establishing strategies for implementing rights advice in practice.

Expected outcomes:

  • Patients will know they have Mental Health Act rights.
  • Patients will better understand their rights and how to exercise them.
  • Clinicians will improve their knowledge about the Mental Health Act.
  • Clinicians will gain strategies for implementing rights advice in their workflow.

The activities of this team, with a balance of researcher, clinician, and patient representation, align well with integrated knowledge translation best practices and with the health authority’s priority of providing patient-centred care.

Autism and Aboriginal families: Bridging the cultural gap through collaborative dialogue

Research co-leads:

Research user co-leads:

  • Romona Baxter
    Nzen’man’ Child and Family Development Centre Society

Team members:

  • Emily Gardiner
    University of British Columbia
  • Deborah Pugh
    Autisum Community Training
  • Rona Sterling-Collins
    Rona Sterling Consulting

This project will shine a light on a particular health inequity facing Aboriginal* communities in British Columbia, specifically those related to the delayed access to diagnostic and treatment services for individuals with autism spectrum disorder (ASD).

Though precise prevalence rates of ASD among Aboriginal children in Canada are unknown, data from other populations indicate this disorder is significantly under-diagnosed among Aboriginal populations (e.g. Native Americans and Australian Aboriginals). Recent personal communication with the provincial ministry overseeing ASD diagnosis and intervention funding (Ministry of Children and Family Development) suggests that in British Columbia, ASD is as prevalent among Aboriginal children as it is among those of non-Aboriginal ancestry, but that these children are receiving a diagnosis later and missing out on critical early intervention. We suspect this difference in access is related to unique challenges associated with geographical and cultural issues, the lack of specialized professionals in rural and remote regions of the province, cultural and spiritual beliefs about disability, and to histories of colonization and oppression.

This project aims to address this health disparity by beginning a dialogue with Aboriginal communities about their experience with ASD.

A two-day knowledge gathering event for Aboriginal families of children with ASD and their service providers will be hosted in partnership with an Aboriginal community. At the event, an overview of available provincial resources will be provided, including culturally appropriate information on ASD. Attendees will then be broken into small breakout discussion groups, and families and service providers will be invited to share their support experiences, perceived gaps and needs, and identify opportunities for how health research could facilitate improvement. Information and resources will be shared and exchanged with families, professionals, and community leaders.

These events will allow for the gathering of information on the challenges and barriers experienced by the Aboriginal communities of the Nlaka’pamux Nation, comprised of 16 First Nation communities in the Lytton and Merritt areas, as well as an off-reserve population in the Merritt area. Once the support needs of this community is understood, priority policy issues and future research questions will be identified.

* ‘Aboriginal’ is the term of preference for our research user co-lead.

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.

Delivery of self-management through a peer-support telehealth intervention in patients with cardiovascular disease: The Healing Circles Project

MSFHR is contributing matched funding for Dr. Scott Lear’s research, one of 22 projects as part of the Canadian Institutes for Health Research (CIHR) eHealth Innovation Partnership Program (eHIPP). eHIPP was designed to address gaps in health care—including supporting seniors with complex care needs in their home—by stimulating collaborations between health researchers and Canadian innovative technology companies. MSFHR is also contributing funds towards the eHIPP research projects of Drs. Ellen Balka and Kendall Ho.

Cardiovascular disease (CVD) is a leading cause of death and disability in Canada, resulting in an estimated $22.2 billion in health care costs and lost productivity annually. Older adults are afflicted more than any other population, with many dealing with complex chronic conditions in isolation.

Patient self-management has been found to play a key role in improving patient health and reducing hospital admissions. Correspondingly, social and peer support, and timely access to credible information on managing CVD, are essential for patient self-management and quality of life. Over a four-year period, Dr. Scott Lear, a professor in the Faculty of Health Sciences and the Department of Biomedical Physiology and Kinesiology at Simon Fraser University, and his team based at St. Paul’s Hospital, will study the use of a new application, Healing Circles, that offers support to seniors with CVD while staying in their homes and communities.

Healing Circles is a private and secure peer support and self-management platform created through a partnership between university-based researchers, industry, decision-makers, clinicians and patients. The Healing Circles application, accessible on smartphones, tablets, and desktop or laptop computers, was developed by Curatio, a digital mobile health company, headquartered in Vancouver. Expansion of the use of Healing Circles by seniors with CVD builds on Lear’s pilot study of the application involving women with heart disease from across Canada. After ten weeks, the women reported being better able to manage their health through the peer support and knowledge gained.

Healing Circles Project participants form virtual 'Circles' with 8 to 10 other patients to connect with and support one another as they learn to live day-to-day with their CVD. Additionally, the 250 study participants can interact with all members of the wider Healing Circles community to share experiences. Investigators anticipate that CVD patients using the Healing Circles platform in their homes will have improved self-management skills compared to patients receiving usual care, and improved quality of life, preventing secondary complications and reducing the need for health care and hospital use.

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.

Neuromodulation research program for youth addiction and mental health

Each year, approximately 1 in 5 Canadians experiences a mental health or addiction problem. Young people aged 15 to 24 are more likely to experience mental illness and substance use than other age groups.

Depression is one of the most common mental illness, but current treatments are either ineffective or lead to side effects in up to 50% of youth. In youth, medications are often borrowed from adult population not accounting for age-related brain differences. New solutions are needed to address major gaps in treatment of youth mental health.

Dr. Farzan is collaborating with physicians, neuroscientists, engineers, and health authorities to develop and apply more precise and innovative methodologies to study the brain and address this gap. She is combining non-invasive brain stimulation and brain monitoring technologies to study what may underlie depression in young age, and how each treatment affects the brain. She is also developing non-invasive brain stimulation technologies for youth that do not respond to medications or behavioral therapy. This research has tremendous potentials for leading to introduction of a new therapy for youth who are failing currently available treatments.