Creative knowledge translation to support BCC’s Personalized OncoGenomics Program

Co-lead:

  • Marco Marra
    BC Cancer

Team members: 

  • Jessica Nelson
    Canada's Michael Smith Genome Sciences Centre
  • Lindsay Zibrik
    BC Cancer – Vancouver
  • Kirstin Brown
    Canada's Michael Smith Genome Sciences Centre
  • Kevin Sauve
    Canada's Michael Smith Genome Sciences Centre

The Personalized Oncogenomics (POG) program at BCC is a patient-driven clinical research project which uses genome sequencing to inform cancer treatment and care. Delivery of the POG program involves a diverse group of stakeholders, all with varying health literacy levels. To close the literacy gap, POG must explore new knowledge translation channels to improve health literacy and education.

Knowledge translation is becoming increasingly common in clinical practice. Best practices recommend the use of lay language and to present material in popular, engaging and creative formats such as video and online content to reach and engage a large audience. Research suggests one of the most effective methods is through animated videos (Meppelink et al., 2015; George et al., 2013).

The goal for this project is to develop a short, patient- and public-focused animated video about the POG program and to showcase the video to our knowledge users  in a web-based format. Outcomes include improved awareness about the POG program, improved health literacy for patients considering POG or healthcare professionals new to POG, and improved understanding of how POG supports and enhances patient care in BC.
 

Development of “Dietary Approaches to Stop Hypertension (DASH)-Heart and Stroke (HAS) Calculator” for personalized feedback

Co-lead:

  • Jiak Chin Koh  
    Providence Health Care

Team members: 

  • Douglas Manuel
    Clinical Epidemiology Program, Ottawa Hospital Research Institute
  • Health Analysis Division of Statistics Canada
  • University of Ottawa Departments of Family Medicine, and Public Health
  • Kimberly McGrail
    Centre for Health Services and Policy Research
  • Health Data Research Network Canada (and SPOR Canadian Data Platform)
  • Population Data BC
  • UBC Health
  • UBC School of Population and Public Health
  • Deirdre Hennessy
    Health Analysis Division of Statistics Canada
  • Natalie Walshaw
    Cardiac Clinic, Royal Columbian Hospital, FH
  • Courtenay Hopson
    University Hospital of Northern BC, Northern Health
  • Jennifer Brown
    The Ottawa Hospital Bariatric Centre of Excellence
  • Alison Quinlan
    BC Ministry of Health
  • Food, Nutrition and Health Program, UBC
  • Carol Anderson
    Interested Public / Community User
  • Adelia Jacobs
    Human Nutrition and Dietetics, Food, Nutrition and Health Program, UBC
  • Julia Chen
    Dietetics, UBC

A healthy lifestyle is the cornerstone of disease prevention and improvement of health. While most Canadians know that healthy eating can reduce the risk of chronic disease, they may not appreciate their own dietary pattern, and specifically may not know its associated health risks, or ways of improving it. The Dietary Approaches to Stop Hypertension (DASH) dietary pattern is effective for reducing high blood pressure (hypertension) and heart disease (cardiovascular disease) risk, yet adherence to this dietary pattern in Canada is low. With this grant support, our team of healthcare professionals and researchers will develop and distribute a web-based, mobile-friendly DASH-Dietary Pattern Calculator that addresses this gap by providing a personalized estimate of the DASH dietary pattern and cardiovascular disease risk. The tool, which we call the DASH-Heart and Stroke (DASH-HAS) calculator will also provide individualized suggestions on how to improve dietary patterns to be in line with established DASH dietary recommendations.

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

Co-lead: 

  • Sarah Cockell  
    Providence Health Care Heart Centre

Team members:

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

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

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

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

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

Cultural safety in knowledge exchange: Supporting dissemination activities for the FNHA Guest Edition of the International Journal of Indigenous Health

Co-lead: 

  • Katie Bauder
    FNHA

Team members: 

  • Alexa Norton
    FNHA
  • Namaste Marsden
    FNHA
  • Kate Jongbloed
    FNHA
  • Riley Bizzotto
    FNHA
  • Jennifer Murray
    FNHA

In 2019, the FNHA partnered with the International Journal of Indigenous Health to release a special Guest Edition titled "Health Systems Innovation: Privileging Indigenous Knowledge, Ensuring Respectful Care, and Ending Racism towards First Nations in Service Delivery.” This proposal describes a series of knowledge translation (KT) activities that will bring wider awareness to the edition and will result in a timely and relevant KT tool. Through a Virtual Launch of the FNHA Guest Edition, we will showcase the range of submissions by Indigenous researchers and allied collaborators and engage in dialogue about how to best translate this information so that it is relevant and useful for Indigenous people and communities. Armed with insight about how to best translate and disseminate the FNHA Guest Edition, we will collaborate with Indigenous creatives (for example artists, filmmakers or digital storytellers) to develop and disseminate a KT tool for building capacity in community. By engaging in community-defined KT, we help to ensure that the findings and knowledge assembled within the Guest Edition are appropriately translated and will be of value to Indigenous people and communities.

“HIV Made Me Fabulous:” Utilizing film for knowledge dissemination and stigma reduction

Co-lead:

  • Valerie Nicholson 
    BC Centre for Excellence in HIV/AIDS

Team members: 

  • Allison Carter
    SFU
  • Lori Brotto
    Women’s Health Research Institute
  • Nicole Prestley
    Women’s Health Research Institute
  • Melissa Nelson
    Women’s Health Research Institute
  • Juno Roche
    Sophia Forum
  • Edmond Kilpatrick
    SFU
  • Florence Anam
    Africa for MSF
  • Marvelous Muchenje
    ViiV Healthcare
  • Azra Bhanji
    SFU

People who have an undetectable viral load cannot transmit HIV during condomless sex. However, women living with HIV continue to face HIV-related stigma. “HIV Made Me Fabulous” is a short film (https://youtu.be/QamnyGc0gtY) grounded in current HIV science that invites audiences to understand the physically and emotionally charged experience of living and loving with HIV from a woman’s perspective. This project aims to disseminate the film to advance public understandings of sexuality and HIV, to reduce HIV-related stigma and improve the health of women living with HIV. 

Our team will:

  1. Host four virtual film screenings and facilitated discussions, and assess impacts among priority target audiences (i.e. women with HIV, providers/policymakers, the general public).
  2. Use findings from the screenings to develop a film discussion guide to support others (e.g. HIV support groups, care providers, gender equity leaders) to screen the film and facilitate safe, informed, and evidence-based discussions.
  3. Widely disseminate the film and discussion guide via YouTube, social media, and community/academic forums. Mixed methods will be used to evaluate the reach and impact of this innovative, arts-based, technology-driven KT project.

Priorities for Rural and Remote Health Resource allocation in Northern BC (PLURAL North)

Co-lead:

  • Theresa Healy  
    UNBC Health Research Institute

Team members: 

  • Magda Aguiar
    UBC
  • Glory Apantaku
    UBC
  • Lara Frederick
    Northern Health 
  • Kim Jong
    Northern Health 

We aim to create a website that health economics researchers, policy makers and Northern BC community members can use to explore issues related to resource allocation in the north, to interact with each other and generate new aligned research questions. We are merging health economics research with arts-based research to expand the reach of the and impact of our research activities and attract the attention of diverse audiences. 

We will use qualitative methods to explore how contextual factors in rural and remote settings in Northern BC might challenge common assumptions of efficiency, imply different priorities and what this means for health economics methods. We will combine traditional qualitative methods of data collection — focus groups — with novel, arts-informed research to fully represent diverse ways of knowing and experiencing the world, and build relationships with rural communities that goes beyond academic inquiry. In the context of rural and remote health, visual ways of expression will create more impactful results and emphasize unique challenges people face in accessing health care such as scarcity of resources, low population density and isolation, which may not be appreciated by those living in urban settings.
 

Disseminating research outputs on actions to modernize gender, sex, and sexual orientation documentation in Canadian electronic health records

Co-lead: 

  • Jody Jollimore
    Community-Based Research Centre for Gay Men's Health

Team members:

  • Roz Queen
    UVIC
  • Marcy Antonio
    UVIC
  • Kelly Davison
    Canada Health Infoway
  • Karen Courtney
    UVIC
  • Aaron Devor
    UVIC

In this REACH project, we will share our prior research and engage stakeholders to discuss A) how our prior research output can address the needs of sexual and gender minorities (SGM) through improved gender, sex and sexual orientation (GSSO) documentation in electronic health records (EHRs), and B) how the prior output and action plan may be transformed into setting-specific knowledge tools.  

Our research team worked with Canadian stakeholders to improve the definition, collection and use of GSSO data in EHRs and generated the following outputs:

  1. An environment scan of how GSSO data are defined in EHRs
  2. Literature reviews of GSSO documentation — current approaches, gaps, needs and improvement efforts
  3. GSSO terms people commonly use to identify themselves
  4. An action plan with a set of broad, equity-oriented clinician-focused interventions to improve GSSO documentation in EHRs

In partnership with the Community-Based Research Centre, we will translate these findings into appropriate media and forms for dissemination to our diverse stakeholder groups. The expected outcomes of this project are enhanced dissemination to stakeholders and SGM-tailored knowledge translation tools in different healthcare contexts in BC.

Exploring the role of community resilience in children’s developmental health outcomes

Co-lead:

  • Mike Hooker    
    BC Ministry of Education

Team members: 

  • Alisa Almas
    HELP, UBC
  • Joanne Schroeder
    HELP, UBC 
  • Sally McBride
    HELP, UBC
  • Katherine Brown
    Rural and Remote Division of FP
  • Anita Ely
    Interior Health
  • Jill Zacharias
    City of Revelstoke
  • Nicole Dawydiuk
    HELP, UBC
  • Tracy Spannier
    Associate Executive Director

Revelstoke, a rural community in the Interior of BC, has had some of the best developmental health outcomes for children and youth in BC over time, as measured by HELP’s population level monitoring system. Through the project, data sets will be aligned across age groups and over time to explore the contribution of community resilience to maintaining positive outcomes, particularly post-COVID-19.

Sex, pain & endometriosis: Promoting awareness of a new evidence-based patient-centered website

Co-lead: 

  • Jessica Sutherland
    BC Women's Hospital & Health Centre

Team members: 

  • Heather Noga
    Women's Health Research Institute
  • Kiran Parmar
    UBC
  • Natasha Orr
    UBC
  • Rebecca Coxson
    UBC
  • Sarah Lett
    Mass Velocity
  • Endometriosis Patient Research Advisory Board
    BC Women's Centre for Pelvic Pain & Endometriosis
  • Catherine Allaire
    BC Women's Hospital
  • A. Fuchsia Howard
    UBC

Endometriosis is a debilitating disease characterised by tissue similar to that from inside the uterus growing outside the uterus affecting ~10% of females. Chronic pain, menstrual pain, infertility and painful sex are common, but endometriosis often goes undiagnosed for years due to stigma and normalization of symptoms.   Painful sex can be particularly challenging to discuss with partners and healthcare providers. Imagine fearing intimacy, ridicule, degradation of relationships and an inability to conceive because sex is too painful and having limited resources for validation and trustworthy information.

Over the last 10 years, the Endometriosis Pelvic Pain Laboratory has built a patient-oriented research program with over 70 scholarly publications. In 2018, we established a multidisciplinary team to design an online educational resource. The Sex, Pain & Endometriosis website, launching in Fall 2020, provides a respectful, inviting and visually appealing environment of evidence-based information. The proposed campaign will create awareness of this resource and establish the site within the endometriosis community. Success will be determined by website visits and measured by tracking online engagement and visitor metrics.

Women’s health knowledge translation initiative & science communication training program

Co-lead:

  • Katherine Moore
    UBC

Team members: 

  • Sarah Munro
    CHÉOS
  • Lori Brotto
    Women’s Health Research Institute
  • Marina Adshade
    UBC
  • Shirley Weir
    Menopause Chicks
  • Patricia Tomasi
    Canadian Perinatal Mental Health Collaborative
  • Melissa Nelson
    Women’s Health Research Institute
  • Bonnie Vockeroth
    UBC
  • Victoria Gay
    BC Women’s Foundation
  • Vanessa Hrvatin
    Centre for Brain Health
  • Bonnie Lee
    UBC
  • Lesa Dawson
    Memorial University
  • Beverley Pomeroy
    BC Support Unit

The proposed project will provide opportunities for multidisciplinary trainees to develop and strengthen their science communication skills by learning from experts and gaining hands on experience translating knowledge using multiple mediums—a women’s health podcast, video series and blog. These KT products will draw attention and dispense knowledge to the public and the scientific community about women’s health research. Why is this important to convey? Although funding agencies mandate the inclusion of both sexes, women’s health is much more than how they differ from men. Women’s health is directly influenced by physiological and  societal challenges that are unique to women. There is a critical need to convey how different physiological experiences (menstruation, pregnancy, menopause) influence women’s health and how gendered experiences and expectations drive disparities in women’s health (e.g. greater misdiagnosis in women compared to men). For example, oral contraceptives influence depression risk depending on a woman’s age or whether she is pregnant, postpartum or menopausal, as these factors differentially influence drug efficacy. MSFHR funding will provide payments for research users and trainees to produce outputs.