POR is an increasingly popular approach to research, involving meaningful partnerships with patients to improve the relevance and use of research. There is an increasing focus on how teams can best support partnerships, including fair compensation for patients partners and greater openness about research funding practices. This is particularly important when research is funded by private companies or donors, as COI can arise and may affect the ethical conduct or quality of the research.
A COI can happen when a research team member stands to gain status or financial advantages as a result of a research partnership and teams are faced with the need to find ways to address these. However, little is known about how to manage COI in POR. Our previous research has explored the research literature, as well as the perspectives of those engaged in POR. We found few examples of how COI can be managed and a need for practical resources and tools. In this planned research, we will work together to create a guidebook, including resources and tools, to help POR teams identify and manage COI. Designed to reflect needs of diverse audiences, we will share these widely to raise awareness, support best practices, and evaluate its usefulness.
Team members: Marc Bains (HeartLife); Stirling Bryan (BC Academic Health Science Network); Alison Hoens (UBC); Michelle Mujoomdar (Canadian Agency for Drugs and Technology); Trina Fyfe (University of Northern British Columbia); Iva Cheung (Freelance); Erin Michalak (UBC and BC SUPPORT Unit); Justin Otteson (BC SUPPORT Unit); Haydn Molcak (UBC); Daman Kandola (University of Northern British Columbia); Jennifer Brown (UBC); Nassim Adhami (University of Northern British Columbia); Shayna Dolan (University of Northern British Columbia)
The Strengthening Cultural Identity project will connect urban Indigenous youth in care to language learning resources and culturally centered coming of age activities in lək̓ʷəŋən territory (Victoria, British Columbia). These elements were identified by youth participants during the 2018-2021 Coming of Age Project, as a way to strengthen their Indigenous identities. Building on the partnership between Surrounded by Cedar Child and Family Services (SCCFS) and the University of Victoria, we are proposing a knowledge sharing project that will support two of SCCFS’s youth groups, the Xe’Xe’tuls’thut (leadership) group and the Youth Advisory Council, in determining how they would like to integrate language and cultural teachings into their lives.
We will do this by:
- Translating knowledge sharing resources into lək̓ʷəŋən’anthun (Lewungen’athun) to honour the territory where we work, and nuučaan̓uɫ (Nuu chah nulth), to recognize the diversity of the urban Indigenous youth-in-care community.
- Working with the youth to facilitate access to language learning (e.g. the KS tools, language resources/teachers) and cultural activities in self-determined ways
- Celebrating what we have learned at a community feast.
Team members: Jennifer Chuckry (Surrounded by Cedar Child and Family Services); Andrea Mellor (University of Victoria)
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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
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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.
Award Update: March 2022
The POG Knowledge Translation working group produced an animated video that explains cancer, genomics, and precision medicine using vocabulary and engaging graphics (in six languages) suitable for many audiences, from experts to those with no knowledge of the science.
Learn more on Genome Sciences Centre’s website.
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Co-lead:
- Jiak Chin Koh
Providence Health Care
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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
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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.
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Co-lead:
- Sarah Cockell
Providence Health Care Heart Centre
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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
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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:
- Online information is often incorrect
- Pregnant women are poorly informed
- 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.
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Co-lead:
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Team members:
- Alexa Norton
FNHA
- Namaste Marsden
FNHA
- Kate Jongbloed
FNHA
- Riley Bizzotto
FNHA
- Jennifer Murray
FNHA
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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.
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Co-lead:
- Valerie Nicholson
BC Centre for Excellence in HIV/AIDS
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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
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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:
- 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).
- 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.
- 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.
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Co-lead:
- Theresa Healy
UNBC Health Research Institute
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Team members:
- Magda Aguiar
UBC
- Glory Apantaku
UBC
- Lara Frederick
Northern Health
- Kim Jong
Northern Health
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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.
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Co-lead:
- Jody Jollimore
Community-Based Research Centre for Gay Men's Health
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Team members:
- Roz Queen
UVIC
- Marcy Antonio
UVIC
- Kelly Davison
Canada Health Infoway
- Karen Courtney
UVIC
- Aaron Devor
UVIC
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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:
- An environment scan of how GSSO data are defined in EHRs
- Literature reviews of GSSO documentation — current approaches, gaps, needs and improvement efforts
- GSSO terms people commonly use to identify themselves
- 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.
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Co-lead:
- Mike Hooker
BC Ministry of Education
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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
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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.
