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.

Building partnerships for implementing a decentralized eHealth collaborative gout care model: BRIDGE

Research co-leads: 

Research user co-lead:

  • Dr. Kam Shojania
    University of British Columbia

Team members: 

  • Dr. Nick Bansback
    University of British Columbia
  • Dr. Hyon Choi
    Harvard University
  • Kelly English
    Arthritis Research Canada Patient Advisory Board 
  • Russell Friesen
    St. Paul's Hospital
  • Alyssa Howren
    University of British Columbia
  • Dr. Alison Kydd
    University of British Columbia
  • Dr. Diane Lacaille
    University of British Columbia
  • Dr. Linda Li
    University of British Columbia
  • Dr. Nicole Tsao
    Harvard University
  • Dr. Peter Zed
    University of British Columbia

Gout is a common and very painful type of joint disease caused by too much uric acid build up in the body. In 2012, our research team showed that gout affects over 171,000 people in BC and that hospital visits from gout has doubled from 2000 to 2011. This is alarming as the cause of gout is known and drugs that lower uric acid are available. Indeed, despite being a curable disease, gout has not been managed well.

In 2019, we completed research that showed that health professionals including rheumatologists, pharmacists, and dietitians remotely working together and sharing electronic medical records (EMR) is a feasible and effective way of caring for gout patients. It is important to continue to work towards implementing this promising approach to gout care. This includes involving family physicians who see the majority of gout patients as well as exploring access for gout patients living in both urban and rural areas.

Our proposed activities involve building partnerships with gout patients, health professionals, researchers, and EMR experts across BC to gather perspectives and expertise needed to inform and design future implementation research of this unique way of caring for gout patients. 

Developing an Evidence-, Equity-, and Community-Informed Agenda for Rural Health Research in BC

Research co-leads: 

Research user co-lead:

  • Deanne Taylor
    Interior Health Authority

Team members: 

  • Dr. Barbara Buckley
    Thompson Rivers University
  • Dr. Jason Curran
    Rural Coordination Centre of BC
  • Alex Kent
    Simon Fraser University
  • Dr. Jude Kornelsen
    University of British Columbia
  • Dr. Jen Miller
    Health Systems
  • Brad Anderson
    Aboriginal Health
  • Kim Peake
    IH Research Department, BC Support Unit 
  • Sage Runner
    IH Research Department

Rural communities in British Columbia (BC) face challenges in accessing care and services. Many rural and remote communities are First Nations, for whom geographic and resource inequities are compounded by sociopolitical and historical injustices. Equity considerations are critical to understanding the unique and diverse experiences and needs of rural communities. Research can help generate evidence, equity, and community-informed responses to the needs and priorities of rural communities. It can play a role in co-creating new ways of working together. Yet, BC has no coherent set of guidelines to inform efforts or investments in rural health research.

This C2 grant will bring people together to share their perspectives about the pressing research priorities for rural communities. Together, people who live and work in (or with) rural communities will articulate priorities for rural health research in BC. This early set of priorities will inform broader online dialogue, where people will collectively shape a vision for rural health research. The outcome will be an evidence and community-informed agenda for rural health research that can guide future directions for funders, researchers, health systems, and community partners.

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.

Building a partnership between emergency services and youth mental health services in BC

Research co-leads: 

Research user co-lead:

  • Dr. Frank Scheuermeyer
    Providence Health Care

Team members: 

  • Dr. David Barbic
    University of British Columbia, BC Emergency Network, Centre for Health Evaluation & Outcome Sciences 
  • Dr. Steve Mathias
    Inner City Youth Program, St. Paul's Hospital, University of British Columbia, Infant, Child, and Youth Mental Health and Addictions Regional Program, Vancouver Coastal Health, Centre for Health Evaluation & Outcome Sciences 
  • Pam Liversidge
    Foundry
  • Tara Beaulieu
    University of British Columbia, British Columbia Centre on Substance Use

In Canada, there has been a profound disconnect between emergency services and mental health services for youth and young adults. Recent evidence suggests that more than half of Canadian youth and young adults presenting to an Emergency Department (ED) with mental health and substance use (MHSU) needs have not had any previous mental health-related contact with the health care system.

In BC, the opioid epidemic has compounded this crisis, with youth and young adults accounting for 20-25% of all opioid-related overdoses and deaths. From coast to coast, there is an immediate need to improve referral to integrated youth and young adult services to limit repeated ED visits and hospitalization for MHSU disorders and to promote the health and well-being of this population. The goal of our work is to build a partnership in BC between a network of EDs and an integrated youth and young adult health services network called Foundry.

Specifically, we propose to coalesce a group of patients and their family, service providers, clinicians, and physicians for a one-day workshop to inform the development of an intervention (ED2Foundry) designed to improve the linkages between EDs and community health services for youth and young adults with MHSU concerns.  

Collaborating to narrow the evidence-to-practice gap in communication care for people with dementia

Research co-leads: 

  • Tami Howe
    University of British Columbia 

Research user co-lead:

  • Katharine Davies
    Providence Health Care, University of British Columbia – Vancouver

Team members: 

  • Indershini Pillay
    Providence Health Care
  • Tara Chen
    Providence Health Care
  • Dr. Jeff Small
    University of British Columbia

Communication is central to everyday life. It is essential for maintaining relationships with family and friends and for participating in community, social, and leisure activities. In older adults, communication is particularly important because of the increased risk for social isolation and depression. A major contributor to communication disorders in BC is dementia, which has an estimated prevalence of 62,000. Most people with dementia (PWD) experience communication difficulties early on, making it a high priority for intervention.  

Speech-language pathologists (SLPs) are the health professionals with specialist knowledge in managing communication disorders. There is a strong evidence base for the provision of nonpharmacological interventions to address the communication needs of PWD and their families. However, SLPs report many barriers to implementing these interventions and PWD seldom have access to evidence-based communication care. There is a need to narrow this evidence-to-practice gap. We plan to create a collaboration between clinical research users and researchers to identify the barriers and facilitators to implementing evidence-based communication care in BC and to develop a set of research priorities for this area.   

Development of a comprehensive vaccine research agenda for BC through multi-faceted collaboration

Research co-lead: 

Research user co-lead:

  • Alastair McAlpine
    BC Children's Hospital, Sunny Hill Health Centre for Children

Team members: 

  • Dr. Monika Naus
    BC Centre for Disease Control, University of British Columbia 
  • Dr. Tom Blydt-Hansen
    BC Children's Hospsital, University of British Columbia
  • Dr. Al-Ghaithi
  • Dr. Bonnie Henry
    Provincie of BC
  • Dr. Sally Lawrence
    BC Children's Hospital
  • Dr. Kyla Hildebrand
    BC Children's Hospsital
  • Dr. Lori Tucker
    BC Children's Hospsital

Vaccine research projects have traditionally been designed by researchers with/without policymakers or doctors and without public involvement – the very people we are trying to protect from serious infections. In this project we will bring together groups of people with interest and expertise in vaccine research.

Our goal is to develop a plan for future vaccine research projects which is relevant to everyone – researchers, the public, public health and government officials who decide immunization programs and doctors. We will include trainees to ensure we are leaving the next generation in safe hands. We will first arrange a meeting of people from these different groups to discuss vaccine research priorities. We will then carry out a survey to include opinions from those who could not be included in the meeting.

Finally, we will bring the results of the survey to a final meeting where we would like to end up with at least 2-3 projects which address the identified BC vaccine research priorities – we will then try to obtain funding for these projects. This process will create a new group of people who we hope will work together for many years to come and make sure that vaccine research in BC remains relevant for everyone. 

Surveillance concerns and opportunities: using technology devices for overdose detection

Research co-leads: 

  • Dr. Lianping Ti
    University of British Columbia, British Columbia Centre on Substance Use  

Research user co-lead:

  • Sampath Satti
    Brave Technology Cooperate

Team members: 

  • Shawna Blomskog
    Brave Technology Cooperate
  • Jenna van Draanen
    British Columbia Centre on Substance Use, UBC
  • Rod Knight
    British Columbia Centre on Substance Use, UBC
  • Jeffrey Morgan
    British Columbia Centre on Substance Use, Community-Based Research Centre
  • Oona Krieg
    Brave Technology Cooperate

The proposed activities include two workshops aimed at the collaborative development of a community-informed research agenda at the intersection of applied ethics and the use of technology to combat the overdose crisis. Brave Technology Coop (Brave) is currently piloting a new technology -a sensor that can detect changes in breathing- to aid in monitoring bathrooms for overdose intervention in commercial buildings in Vancouver's downtown eastside, with research support from the BC Centre on Substance Use.

While this intervention has the potential to make spaces safer, it also introduces privacy concerns for people accessing these spaces, particularly people who use drugs (PWUD) who face stigmatization and criminalization. Our aim is to convene stakeholders in Vancouver in November 2019 and February 2020 to discuss the ethical implications of surveillance in spaces where people may be using drugs, including how consent should be obtained with the use of passive overdose detection devices, and how to maintain privacy of sensitive data collected.

We will ultimately develop a collaborative research agenda that will facilitate PWUD, researchers, research users, and community stakeholders to co-develop systems of overdose response. 

Building a provincial public health agenda for addressing geographic contributors to overdose

Research co-leads: 

  • Amanda Slaunwhite
    Provincial Health Services Authority 

Research user co-lead:

  • Gillian McLeod
    City of Delta

Team members:

  • Dr. Aamir Bharmal
    Fraser Health Authority
  • Jennifer Hawkins 
    Fraser Health Authority
  • Dr. Michael Schwandt
    British Columbia Centre for Disease Control, University of British Columbia
  • Amy Salmon
    Centre for Health Evaluation and Outcomes Sciences
  • Marinel Kniseley
    Centre for Health Evaluation and Outcomes Sciences
  • Dr. Alexis Crabtree
    University of British Columbia
  • Dr. Jesse Kancir
    University of British Columbia

Illicit drug overdose is the central provincial public health challenge in British Columbia (BC). All communities in BC have been affected by the overdose crisis, however little is known about how harm reduction and addictions treatment interventions can be adapted to rural and remote places that do not have supervised consumption/overdose prevention sites or addiction medicine providers.

We aim to address this significant gap in knowledge by convening a diverse group of persons with lived experience, policy makers, clinicians, and researchers from across BC to develop a public health action and research agenda for addressing geographic and place-based contributors to overdose that leverages existing data sources such as the Provincial Overdose Cohort. The objectives of this project are to:  

  1. Determine knowledge gaps and identify opportunities to collaborate across organizations and regions to better understand (a) geographic variations in overdose and (b) access to harm reduction, addictions treatment and acute care services outside of urban centers;  
  2. Identify immediate (6 month), short-term (1 year) and medium term (2 year) priorities for action in addressing overdose deaths in sparsely populated places with an emphasis on scaling up existing networks, programs and services;  
  3. Develop an interactive concept map and lay language publication that synthesizes the results of (1) and (2) for public release.   

 

‘Exploring Being Well Together’: Maternal & Infant Health Equity in the Context of HIV

Research co-leads: 

  • Laura Sauve
    University of British Columbia  
  • Dr. Alison Gerlach
    University of Victoria 

Research user co-lead:

  • Matthew Carwana
    BC Children's Hospital, University of British Columbia  

Team members:

  • Diana Elliott
    Aboriginal Infant Development Program
  • Amanda Tallio
    YouthCo
  • Elder Roberta Price Vancouver Coastal Health, University of British Columbia
  • Jenny Morgan 
    C&W Indigenous Health Programme
  • Rochelle Lesueur  
    C&W Indigenous Health Programme
  • Dr. Ariane Alimenti
  • Dr. Tatiana Sotindjo
  • Nicci Stein
    Teresa Group, Aids Service Organization in Ontario

The aim of this project is to mobilize knowledge on supporting maternal wellbeing and the early health and development of infants in British Columbia (BC) who are affected by human immunodeficiency virus (HIV) and social marginalization. The health and wellbeing of women living with HIV is impacted by social marginalization that can influence their engagement with healthcare and social services for themselves and their children. Children born to mothers living with HIV, are 'HIV exposed but uninfected' (HEU) and have an increased risk of developmental delays compared to the general child population

Children's health and health equity is inseparable from the wellbeing of their primary caregiver(s) and family as a whole. Children's equitable access to health and early years services during the critical early years can improve their long term neurodevelopmental and health trajectory. However, quality assurance and anecdotal evidence suggest that few HEU infants connect with services outside of their HIV care.

Through this project we will engage with mothers with lived experiences, frontline service delivery stakeholders from various community-based organizations that support maternal and infant wellbeing, Elders, HIV advocacy organizations, involved pediatricians and health authority and provincial policymakers