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.

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.

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.  

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

Co-leads:

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

Trainee:

  • 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.). 

Rethinking early intervention therapy with Indigenous communities and families in northern British Columbia

Early intervention therapy (EIT) programs for children with developmental challenges and disabilities have been shown to be highly beneficial for young children (0-5 years) in the wider Canadian population. However, EIT programs are consistently significantly under-utilized by Indigenous communities and families. Indigenous parents and community stakeholder perspectives on EIT are largely absent in current literature, and Indigenous communities are often not consulted on how these programs are delivered. 

Dr. Gerlach’s research will generate new knowledge aimed at improving the health, development, and quality of life of Indigenous children with developmental challenges and disabilities. The research will take place in northern BC, where there are a large number of rural/remote First Nations and urban Indigenous communities. This study builds on Dr. Gerlach’s extensive experience working with Indigenous communities, organizations, and families as an early intervention occupational therapist and community researcher. The methodology has been developed in close collaboration with research impact partners, including community stakeholders, the First Nations Health Authority, the Ministry of Children & Family Development, and child development centers in the northern region. 

A local Indigenous advisory circle will be formed to guide the research process, and sources such as policy documents and interviews with key policy stakeholders will provide insight into how funding, policy, and organizational factors influence Indigenous parents and children’s access to and use of EIT services. The results of Dr. Gerlach’s research will inform the creation of EIT practices and policies that are responsive to the realities, strengths, and needs of Indigenous families and children living in rural and remote communities in northern BC. The findings will also be shared with a wide audience through community forums, policy briefs, and publications.

This research has national and international relevance at practice and policy levels. BC has an opportunity to take a leadership role in this emerging field of research and in the implementation of Jordan’s Principle, which is focused on achieving health equity for all Indigenous children regardless of where they live. 

Understanding health equity and resource development (UnHEARD): New tools for assessing the health equity implications of unconventional natural gas development on rural and remote communities in northern British Columbia

Resource extraction and development activities are the primary drivers of social and economic development for communities across northern Canada, and therefore are significant determinants of community well-being. However, there is growing global recognition that the benefits of resource development are not distributed evenly across the supply chain, and that new tools are required to understand how anthropogenic changes in the natural environment affect population health.

This study uses the case of unconventional natural gas development in northern BC’s rural and remote communities to enhance the scientific understanding between resource development pathways and human health. BC is currently preparing for the rapid development of its natural gas reserves in conjunction with other diverse forms of land use and development (e.g. forestry, mining, industrial agriculture, etc.). However, the health impacts of rapid industrial growth are not well understood, and differences will be abound between gas extracting regions in the northeast of the province, gas transportation corridors through the northern interior, and gas exporting communities on the northwest coast.

In seeking to contextualize health impacts associated with resource development across the supply chain, this research will work to develop a new health equity impact assessment tool that is rooted in international best practices to explicate the intersections between ecosystems, the boom and bust cycle of resource-dependent towns and regions, and the resulting impacts on human health which are often overlooked in existing provincial environmental assessment and cumulative effects assessment protocols. Indeed, an explicit focus on health equity is a purposeful way to understand how health impacts are distributed across time and geographic space related to rapid resource development, thereby giving voice to health issues that often go UnHEARD during project permitting and planning. This work will involve the integration of a variety of data types to track changes in the distribution of health outcomes over time, and enable the identification of programs and protocols capable of mitigating associated health risks. Accordingly, this research will inform provincial regulatory processes through an expanded understanding of environmental disturbance as a context for health promotion, while assisting regional stakeholders in minimizing harmful impacts of industrial activities on community and worker health.

Mirrored integrated patient practitioner journey mapping for addressing persistent health inequities lived by Aboriginal people in Northern British Columbia

Aboriginal people in northern BC live with persistent health service inequities. This research asks:

  1. What is the current character of the interface between health provision institutions and Aboriginal communities in the rapidly evolving social, cultural and political climate?
  2. In the diverse landscape of Aboriginal communities, what are the common gaps in health services and programs, and how can they be addressed in a holistic way to renew the health and well-being of Aboriginal people and communities?     

Research design heavily incorporating Indigenous methodologies, ways of knowing, and decolonizing methodologies will be used to develop a model for integrated health and a well-being journey mapping integrating both sides of the patient/practitioner interface with specific attention to:

  • Socio-cultural determinants of health.
  • The specific context of Aboriginal communities in urban, rural and remote northern BC.
  • Attention to applied methodologies and Knowledge To Action (KTA), Aboriginal KT (AKT), and integrated Knowledge Translation (iKT) strategies.

This work will:

  • Describe the nature of the current paradigm shift in health services and program provision for Aboriginal communities and identify emerging streams of new vision and work to improve their health and wellbeing.
  • Identify and explore community-driven mechanisms to renew trust at the community-institutional interface and to expand access to culturally safer programs in Aboriginal communities.