Raising awareness of conflict of interest in patient-oriented research

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)

Cellular and molecular determinants of myelination across the lifespan

Proper myelination allows for the fast, efficient transmission of nerve impulses which is important for the coordination of movement, integration sensory information and cognition functions. In the brain, oligodendrocytes are the cells that extend numerous processes that wrap nerve cell (neuron) processes in a compact myelin sheath.

The overarching goal of my research program is to delineate the cellular mechanisms that underlie myelination across an organism’s lifespan. Several interconnected research projects investigate different aspects of how myelination occurs in the brain, such as the regulation of gene expression in oligodendrocytes, the cellular communication between oligodendrocytes and neurons, and the impact of environmental factors. These projects use animal models to investigate these biological questions at the molecular level (e.g. DNA, RNA, proteins and lipids). New insights into how these molecules interact to regulate myelination has broader implications for brain development, aging and pathology. This will ultimately lead to better health outcomes for persons living with neurological disorders.

Inheritors of the Future: Community-Driven Voices of Youth Contemplating Health and Wellbeing in Indigenous and Northern Geographies of British Columbia

Youth will inherit the decisions that are made today. Yet, youth in rural and remote northern and Indigenous communities are not often engaged when decisions that will impact their futures are made. Youth, however, are knowledgeable members of communities whose health is intimately connected with community wellbeing; they also have distinct experiences with social, cultural, economic, and ecological determinants that impact health.

This research will explore what youth in rural remote northern and Indigenous communities perceive as healthy communities, and how young people can inform environmentally, economically, and socially healthy futures. After successfully completing two pilot workshops with youth in 2018 and 2019, we will build from the priorities that youth have identified, such as community stressors due to mental health and climate change. We will profile and mobilize youth perspectives on healthy communities and healthy lands through arts-based research. Doing so will provide youth with an avenue to identify unique health priorities emerging from northern BC and their distinct perspectives. Youth participants will also propose strategies that can improve community care and health services across the region.

Leveraging technology to support older persons in rural and northern communities through the Centre for Technology Adoption for Aging in the North – CTAAN

Rural and northern areas in BC cover large areas and support more and more older adults. Older adults may face unique challenges due to the geography, population, and resource availability. These places commonly lag behind urban centers in accessibility to healthcare services, and face healthcare workforce shortages. Innovative solutions are urgently required to support older adults to age safely with quality healthcare services. Technology solutions to support older adults exist and continue to be developed. However, there is a gap between technology development and its implementation and sustained use, especially for older adults in rural and northern areas.

My research program builds upon existing partnerships to address this gap through the creation of the Centre for Technology Adoption for Aging in the North (CTAAN)-A collaborating center for innovations in technology development and implementation to support older adults in rural and northern communities.

Through a range of technology focussed projects, my role as the academic lead of CTAAN is to enhance uptake of technologies supporting adaptation, piloting, and implementation of existing technologies from Canada and beyond and to support older persons to age gracefully.

Building towards consensus on compensation and conflict in patient-oriented research (POR)

Research co-lead: 

  • Davina Banner-Lukaris
    University of Northern British Columbia

Research user co-lead:

  • Marc Bains
    University of Northern British Columbia Health Research Institute

Team members: 

  • Jennifer Brown
    Northern Medical Program
  • Stirling Bryan
    University of British Columbia, BC Support Unit
  • Alison Hoens
    University of British Columbia
  • Daman Kandola
    University of Northern British Columbia 
  • Haydn Molcak
    University of Northern British Columbia 
  • Michelle Mujoomdar
    Canadian Agency for Drugs and Technology

POR describes the process of involving patients and their caregivers in research, not just as participants but also as collaborators and partners. In response to this, there has been increasing calls for patients to receive compensation for their contributions. However, compensation practices and sources of financial support are varied. Increasing numbers of patients and patient organizations are receiving financial support through industry or pharmaceutical organizations, as well as non-profit advocacy groups.  While this has opened up new opportunities for patients to be involved in research, it is unclear how potential conflicts of interest are understood and managed.

Our project seeks to critically explore the compensation of patients in POR and to gain insights into how conflicts of interest are, and could be, managed. We will first host a facilitated live chat on Twitter to gather a range of perspectives from patients and stakeholders. We will analyze this data and will use this to plan and deliver a one-day consultation meeting. We will invite key stakeholders from across British Columbia, including patients, researchers and others, to share their experiences and identify key research questions, gaps and priorities.

SEED: Sharing to change Early childhood Experiences by Developing, caring, compassionate leadership

Research co-leads: 

Research user co-lead:

  • Lauren Irving
    Northern Health Authority

Team members: 

  • Sandra Allison
    Northern Health
  • Jennifer Begg
    Northern Health
  • Chris Bone
    City of Prince George
  • Matthew Burkey
    Cariboo Chilcotin Child Development Centre
  • Stacy Cabage
    HOY Medical Clinic, Foundry Youth Centre
  • Kim Chernenkoff
    The Native Friendship Centre 
  • Darcy Dennis
    Ministry of Children and Families
  • Jenessa Ellis
    Carney Hill Neighbourhood Centre Society, Hadih House
  • Erica Koopmans
    University of Northern British Columbia
  • Christy Kubert
    Child Development Centre of Prince George and District
  • Andrea Maurice
    School District 57
  • Lisa Provencher
    School District 57
  • Rhoda Viray
    Northern Health

Fifty years of infant and early childhood universal health care program evaluation has repeatedly demonstrated that effective early childhood services make a difference to secure more positive long-term health and wellbeing outcomes for children and their families. The early years are a critical period of transitions with fluctuating family needs. An array of services, each with its own structure and process exist. Children whose life circumstances are more complex will need additional support to help them to navigate what is already a challenging developmental journey. Such enhanced services should leverage connectivity by creating and enhancing opportunities for engagement and access despite contextual factors (i.e. rurality).

In addition, we are faced with a shift in the ways we have to work, financial and cost-saving plans, organisational restructuring and nuances linked to rural geography. What our team has come to learn is that in applying services from urban centres there is a lack in understanding the unique environmental factors, fiscal vulnerability, and cultural complexities in the north. Using our completed rapid realist review, as a starting point, we want to engage with a broader community to understand enhanced service needs for the north. Using a systems and compassionate leadership stakeholder approach, we wish to join enhanced service work streams across health, municipalities, social care and not-for-profit organisations.

Making Healthy Connections: A Critical Anti-Racist and Decolonizing Geography of Immigrant and Indigenous Relations in Northern British Columbia

While resources support immigrant well-being in urban settings in southern Canada, little research exists on recent immigrants in northern communities. Moreover, while new research is emerging about the health disparities of Indigenous communities in remote and rural settings, there is very little research that brings the question of immigrant and Indigenous relations together.

To address this gap, this research program will determine factors that influence and support the well-being of recent immigrants in northern BC communities. The project will document, analyze, and provide much needed information about the unique social determinants of health for recent immigrants outside of large urban centres in southern Canada. I will engage recent Filipino immigrants using qualitative research methods and will establish and mobilize a community of experts and highly-trained practitioners to help provide a more nuanced, textured and richer picture of the health needs of northern BC.

Importantly, the research program will not only bring new awareness about the factors influencing health and well-being of Filipino immigrants, it will also explore these factors in relationship to health disparities and innovations of Indigenous northern communities. In sum, this is a project that puts Filipino and Indigenous communities in dialogue to address health disparities.


Cultural agility in Northern BC’s healthcare system: Increasing Indigenous employment participation and responsiveness to Indigenous well-being

Primary Investigator Dr. Sarah de Leeuw and Co-Investigator Dr. Margo Greenwood, together with northern and provincial partners, lead a five-year, 1.3 million research project focused on further enhancement of Indigenous health and the healthcare climate in northern BC.

"Cultural agility in Northern BC’s healthcare system: Increasing Indigenous employment participation and responsiveness to Indigenous well-being" aims to bring about a more culturally safe and humble health care environment in which to both provide and receive care, as well as inspire new generations of Indigenous professionals to join the healthcare systems of northern BC.

Funded through the Social Sciences and Humanities Research Council (SSHRC) and the Canadian Institutes of Health Research (CIHR), this is the first joint federal research partnership grant of its kind to be held at UNBC, and one of only nine such grants held across Canada. The work builds on a pilot project launched in 2016, with both projects part of the joint “Healthy and Productive Work Initiative”.

Central partners include Northern Health (NH), National Collaborating Centre for Indigenous Health (NCCAH), the Michael Smith Foundation for Health Research (MSFHR), Two Rivers Gallery, and the UNBC Office of Research. The project also includes and builds upon numerous new and existing Indigenous and non-Indigenous community partners and collaborators across the north. These include the First Nations Health Authority, the Northern Medical Program, UBC, McMaster University, the Rural Coordination Centre of BC, BC Cancer, Carrier Sekani Family Services, Central Interior Native Health Society, and the Prince George Nechako Aboriginal Employment and Training Association.

The partnership team coming together for this project leans heavily on a history of relationship, commitment, creativity and innovative problem-solving, and a continued need exists for strong relationships, individually, organizationally and systemically, within the shared goal to enhance culturally respectful and safe healthcare practice in northern BC.  

Move the north: Development of a research agenda and action plan for physical activity in northern BC

Research co-leads:

  • Chelsea Pelletier
    University of Northern British Columbia 

Research user co-lead:

  • Sandra Allison
    Northern Health

Team members:

  • Sabrina Dosanjh-Gantner
    Northern Health
  • Guy Faulkner
    University of British Columbia 
  • Gloria Fox
    Northern Health
  • Robin Keahey
    University of Northern British Columbia 
  • Anne Pousette
    Promotion of Wellness in Northern BC
  • Drona Rasali
    BC Centre for Disease Control

Chronic disease risk factors, such as physical inactivity, are more prevalent in the region served by the Northern Health in BC. This vast geographic region is sparsely populated, culturally diverse, and has high variability in infrastructure and knowledge regarding physical activity. With a passionate team of health service providers, researchers, policy makers, and community leaders, this project will develop a set of actionable research questions, identify research priorities, and create a plan for increasing physical activity, improving chronic disease risk factors, and reducing health inequities in northern BC.

This will be accomplished with a two-day physical activity summit consisting of a higher-level meeting focused on advancing health policy, and a second day that engages people working on the ground in physical activity program delivery. Outcomes of this initiative will include a research agenda rooted in community needs and the creation of a Northern Physical Activity Coalition that includes representation from a broad range of passionate researchers and research users.





Developing and disseminating an interactive menstruation (info)graphic (I’M IN)


  • Caroline Sanders
    University of Northern British Columbia
  • Joanne Hall
    Congenital Adrenal Hyperplasia – Living with CAH Support Group, UK


  • Erika Belanger
    University of Northern British Columbia

Following early analysis of data from the Women Health Research Institute (WHRI) grant focusing on wellness in women with congenital adrenal hyperplasia (CAH), it was obvious that there was a need to share, translate, and mobilize knowledge into public and professional domains. Early findings show that menstrual wellness for women with CAH is constrained by the ongoing menstrual taboos, similar for all women. An additional stress factor for women with CAH is the variation in genital anatomy, cycle duration, and the impact of metabolic processes and steroid medication management.

Taboo and limited menstrual information and resources for parents of younger children, patients and health care providers result in knowledge gaps; this limits early and ongoing body wellness conversations. Introducing health concepts linked to menstrual wellness early on can help to reduce stigma and isolation, which builds resilience to support physical health and protect mental wellbeing.

The aim is to build on HealthLinkBC’s “standard” menstrual cycle information by designing a simple, interactive (info)graphic that will lay out the important factors of concern to women with CAH. It is hoped that women will use this KT product when discussing their menstrual (ir)regularities with health care providers (e.g. in specialist and primary care settings). To strengthen product credibility, this interactive (info)graphic will be presented at a WHRI workshop to CAH stakeholders (e.g. women with CAH, parents, health care providers, educators, and advocates); feedback on design, functionality, and content will be incorporated.

This KT work will be launched with provincial events linked to Women’s Day and Rare Disorder Day 2019. In addition, this KT resource will be made freely available via domestic (e.g. Canadian Organization of Rare Disorders (CORD)) and international advocacy and support groups (e.g. dsdfamilies, living with CAH etc.).