Parents and clinicians as knowledge brokers: The co-creation of adapted screen time guidelines for children with autism

Co-lead:

  • Armansa Glodjo
    BC Children’s Hospital and
    Sunny Hill Health Centre for Children
Team members:

  • Yael Mayer
    UBC
  • Mor Cohen-Eillig
    BCCH
  • Janice Chan
    UBC
  • Natasha Kuzyk
    UBC
  • Ryan Octosa
    UBC
  • Kathy Xie
    Student

Children’s overuse of screen time has become a pandemic, even more so during COVID-19, as quarantining and social distancing have increased screen time use. Children with autism spectrum disorder are even more vulnerable when it comes to technology use. They spend more time with screens, and they usually choose isolated activities such as watching videos. Extensive use of screens has many harmful effects, including aggressive behaviour, poor management of emotions, sleep problems, obesity, and engagement in risky behaviours. The ways to decrease risks for children with autism are still unknown.

 

Currently, there aren’t any clear guidelines on managing screen time for parents and clinicians of children with autism. The existing guidelines do not include clear strategies and are based only on studies of typically developing children. Therefore, the purpose of this project is to create clear and applicable screen time guidelines for parents and clinicians of children with autism. We will collaborate with parents and clinicians to develop strategies and recommendations for using screen time properly and decreasing the risks of screen time misuse among children with autism.

Planning to enhance capacity for equity-oriented cancer care in BC

Co-lead:

  • Michael McKenzie 
    BC Cancer

Team members: 

  • Leah Lambert 
    BC Cancer, UBC
  • Annette Brown
    UBC
  • Kelli Stajduhar
    UVic
  • Stuart Peacock
    BC Cancer
  • Fuschia Howard
    UBC
  • Jagbir Kaur
    BC Cancer
  • Scott Beck
    UBC
  • Helen McTaggart-Cowan
    SFU

Early diagnosis and timely treatment are vital to ensure the best outcomes for cancer patients. While major advancements have improved cancer outcomes, alarming differences exist for people who experience social and health inequities. Often, people from marginalized populations present with advanced cancers and have challenges accessing care for diagnosis and treatment due to effects of: structural inequities; impacts of racism, discrimination and stigma; and mismatches between usual approaches to care and individuals’ needs.

Through a series of four virtual meetings, we will bring together healthcare providers, operational leaders, community partners and academic experts to reflect on and discuss the ways in which current cancer care practices, policies and systems are contributing to inequities. Meetings will be aimed at discussing health equity and the state of cancer differences in BC to develop a clear understanding of the problem and to identify challenges and opportunities. Our goal is to establish collaborative partnerships, facilitate knowledge exchange and develop a research proposal to investigate recommendations and solutions for promoting equity in cancer care and improving disparities in cancer outcomes in BC.

Patient-centered development of a research program on social robotics for pediatric anxiety

Co-lead:

  • Nadeen Jaik-Robinson
    Patient partner

Team members:

  • Jill Dosso
    UBC, BCCHRI
  • Jaina Jaik-Robinson
    Community member
  • Alessandra DiGiacomo
    UBC, BCCH
  • Anna Riminchan
    UBC, BCCHRI
  • Katarzyna Kabacinska
    UBC, BCCHRI

Could a social robot — a small robotic character or pet — be helpful to children living with anxiety? For this project, we will work with children and families to imagine the future of robotics for children’s mental health and learn about what useful social robotics for children could look like in British Columbia. Studies have shown that children are highly receptive to potential robotic interventions and are likely to be accepting of them as tools to improve their health. However, social robots are often developed according to engineer- and expert-driven priorities, rather than in consultation with end-user families.

In the proposed work, we will hold a series of three workshops with families with a lived experience of childhood anxiety in order to identify the most pressing research questions when it comes to pediatric mental health and social robotics. We will also learn from these families what outcomes are most important to them. The overall goal of this work is to understand what would make a robotic intervention helpful and meaningful to families.

Co-developing a research plan to investigate inter-disciplinary experiences, enablers, challenges and unintended outcomes of nurse practitioner integration into primary care in Island Health

Co-lead: 

  • Darcy Ross
    Island Health

Team members: 

  • William Cunningham
    Island Health
  • Patti Telford
    Nurse & Nurse Practioners of BC
  • Zachary Matieschyn
    BC Ministry of Health
  • Christina Berlanda
    Island Health
  • Shelley Tice
    Island Health
  • Danielle Daigle
    Nurse & Nurse Practioners of BC
  • Angela Wignall
    Island Health
  • Jinelle Woodley
    Island Health
  • Steve Goodchild
    Island Health
  • Brenda Warren 
    Island Health
  • Leanne Rowand
    Main Island Health Centre
  • Lorine Scott
    FNHA

Nurse Practitioners (NPs) have practiced in BC since 2005, and are qualified to provide holistic primary care across the life span, similar to primary care physicians. Until 2018, NPs were health authority employees in salaried positions; in 2018 the MOH announced 200 new community NP positions and a contract payment structure option. Numerous contracted NP positions have since been introduced in Island Health. Integrating contracted NPs into an established primary care model traditionally provided by doctors has exposed unique challenges, opportunities and unintended outcomes. Although all stakeholders have generally worked well together, unanticipated conflicts and inefficient work flow impacts have arisen. Integrating inter-professional scopes of practice into an efficient and seamless system of innovative primary care in context of mixed expectations has been challenging. Published evidence suggests that full NP role optimization is affected by practice environments. We aim to develop a research plan to identify the enablers, challenges and unexpected outcomes, and determine how innovative processes enabling focused collaboration, clear scope of practice and improved teamwork can improve flow and access in primary care.

AIRWISE – A risk communication strategy for the prevention and early detection of respiratory illness

Co-lead: 

  • Renelle Myers 
    BC Cancer

Team members: 

  • Aleisha Fernandes
    SFU
  • Prabjit Barn
    Legacy for Airway Health
  • Stephen Lamb
    UBC, BC Cancer
  • Mohsen Sadatsafi
    RESP, UBC
  • Christopher Carlsten 
    UBC
  • Rita McCracken 
    UBC, PHC
  • Kevin Keen
    UNBC
  • Anne-Marie Nicol
    SFU, BCCDC
  • Milan Khara
    UBC, VCH
  • Pat Camp 
    UBC, HLI, PHC

Respiratory illnesses, such as asthma, chronic obstructive pulmonary disease, and lung cancer account for the leading causes of preventable deaths in British Columbia. Scientists can now identify people who are at a high risk of developing these devastating illnesses early on when it is possible to prevent, cure or slow the progression of disease. Prevention and early detection programs, however, don’t reach all members of the population equally. In addition, environmental radon and air pollution increase the risk of developing respiratory illnesses for people living in some areas of the province. This study is motivated by the need to expand the reach of prevention and early detection programs through risk communication. Our experienced team of researchers, community stakeholders, trainees, and knowledge translation specialists will define the risk information that is needed for future research and for communicating in clinical and community-based settings. Together, we will convene an advisory committee to design the first version of the AIRWISE risk communication platform and establish community coalitions to evaluate and implement it.

Eng/aging and HIV: Knowledge exchange between administrative data study and older adults living with HIV in British Columbia

Co-lead:

  • Valerie Nicholson 
    BC Centre for Excellence in HIV/AIDS

Team members: 

  • Kathleen Inglis
    SFU
  • Wayne Campbell
    AIDS Vancouver
  • Antonio Marante
    BC Centre for Excellence in HIV/AIDS
  • Patience Magagula
    Afro-Canadian Positive Network of BC
  • Silvia Guillemi
    BC Centre for Excellence in HIV/AIDS, St. Paul's Hospital, Dr. Peter Centre
  • Andreea Bratu
    BC Centre for Excellence in HIV/AIDS

Since the 1980s, HIV/AIDS community groups have engaged with science to ensure that research is done with them instead of simply about them yet it is rare for communities to engage with studies using administrative health data — that is, data electronically generated at every encounter with the health care system for administrative or billing purposes. This is a collaborative project amongst researchers and people living with HIV that explores how to embody the “nothing about us without us” principle in administrative data studies to ensure ongoing authentic engagement across all HIV research. Engaging with an administrative data study called COAST at the B.C. Centre for Excellence in HIV/AIDS, we will co-develop, pilot, and evaluate a process to research the experience of aging with HIV. In B.C., over half of people living with HIV who are on treatment are over 50 years of age. People with HIV are living longer lives. Through a regular series of meetings with our research council, we aim to develop a way to leverage administrative data (COAST) to better understand the complex reality of aging with HIV that is relevant to people living with HIV, which may help improve health services and health outcomes for people living with HIV.

Reimagining perinatal mental health services: Collaborative development of an integrated model of care

Co-lead: 

  • Michelle Carter
    Providence Health Care

Team members: 

  • Wendy Hall 
    UBC
  • Angela Russolillo
    St. Paul's Hospital
  • Brittany Bingham
    VCH Aboriginal Health
  • Christine Ou
    UBC
  • Valerie Rychel
    St. Paul's Hospital
  • Sheila Duffy
    Pacific Post Partum Society
  • Nichole Fairbrother
    UBC

Perinatal mood and anxiety disorders (PMADs) are the most common obstetrical complication in Canada, with serious implications for both the mother and infant. Untreated PMADs are associated with increased risks for poor health and social outcomes, including maternal suicide and medical complications as well as impaired infant and child development. There is increasing scientific evidence that collaboration across clinical services is essential to addressing the complex biopsychosocial needs associated with PMADs. Nevertheless, perinatal mental health (PMH) services in Canada remain fragmented, often resulting in missed opportunities to support necessary care and treatment. 

There is an immediate need to improve the access and integration of services for PMADs in BC. In an effort to narrow the evidence to practice gap, we plan to create a collaboration between clinicians, researchers and individuals with lived experience through a scientific consensus process (Delphi approach) and one-day virtual workshop. Our main objective is to develop an evidence-based, user-informed model of care to advance integrated PMH care delivery in BC and beyond.

Developing a research program on using a restorative approach to address secondary harm to patients, families and clinicians after adverse events in our healthcare system

Co-lead: 

  • Allison Kooijman
    UBCO

Team members:

  • Jo Wailing
    Victoria University of Wellington
  • Robert Robson
    Healthcare System Safety and Accountability Inc.
  • Brenda Morrison
    SFU
  • Malcolm MacLure
    UBC
  • Fiona MacDonald 
    Univresity of the Fraser Valley
  • Diane Aubin
    Diane Aubin Consulting
  • Jennifer Llewellyn
    University of Dalhousie
  • Carolyn Canfield
    UBC
  • Deb Prowse
  • Christina Krause
    BCPSQC
  • Devin Harris
    Interior Health
  • Sandi Kossey
    Canadian Patient Safety Institute
  • Jan Byrd
    Canadian Patient Safety Institute
  • Glenn McRae
    Interior Health
  • Wendy Nicklin
    International Society for Quality in Patient Care
  • David Gustafson
    Community Justice Initiatives Association
  • Alika Fontaine
    University of Alberta
  • Derek Puddester
    College of Physicians and Surgeons of BC
  • Ainsley Young
    Island Health
  • Ryan Sidorchuk
    Island Health

Patient harm in providing health services is a significant safety issue. Many efforts have been made to improve patient safety and prevent harm, however high rates of patient safety events continue. When patient harm does occur, there are negative effects for patients, families and health providers involved. Significant barriers prevent healing after harm. Patients have difficulty finding justice, health providers experience shame and self-doubt, and healthcare facilities are concerned with litigation and reputation. This disconnect between the health system (meant to heal) and the justice system (meant to punish) creates confusion for patients and health providers when medical treatment goes wrong. This process can prevent healing for both patients and health providers. A restorative approach builds relationships, shares experiences related to the harm, and focuses on fairness for individuals involved and to society as a whole. Such an approach has not yet been used in healthcare in Canada. This project brings together a team of researchers and knowledge-users to develop a program of research to address priority questions on this approach, to provide solutions for the impacts of harm for patients, families and health providers.

A collaborative project to explore COVID-19 rapid redesign and redeployment best practices and their uptake in British Columbia long-term care sector

Co-lead: 

  • David Keselman
    Louis Brier Home and Hospital

Team members:

  • Karen Neilson
    BC Ministry of Health
  • Heather Cook 
    BC Ministry of Health
  • Maura McPhee
    UBC
  • Alison Phinney
    UBC 
  • Sabina Staempfli
    UBC
  • Jennifer Stokes
    Island Health
  • Ayako Nilssen
    Island Health
  • Vicki Andersen
    Louise Brier Home and Hospital
  • Mirsad Dragic
    Louis Brier Home and Hospital
  • Keren Gersman
    Louise Brier Home and Hospital
  • Dan Galazka
    Louise Brier Home and Hospital
  • Michael Kary
    BC Care Providers Association
  • Pam Baxter 
    McMaster University

In Canada, 81% of COVID-19 deaths were in long-term care (LTC) settings. To slow the virus spread, the BC government mandated LTC sites to introduce a series of new practices and policies. For example, families and visitors were no longer allowed into LTC sites; and staff were banned from working in more than one location. In June 2020, our research team received an MSFHR grant to examine the intended and unintended consequences of these practices and policies on residents, families and staff in a ‘gold standard’ publicly funded facility with no COVID cases. We have had many interesting findings related to effective pandemic management to date, but it is unclear if these findings are applicable to other BC LTC sites.

The proposed project will bring together nearly 170 researchers and research users across 5 regional health authorities to identify best pandemic management practices and policies and to discuss strategies for their uptake. The network represents 7 key stakeholder groups including policy/advocacy, leadership and resident and family representatives. The project outcomes include recommendations for effective pandemic management in publicly funded BC LTC sites and a research advisory group to support future research.

Building a collaborative research agenda for virtual exercise and nutrition supportive cancer care in BC​

Co-lead: 

  • Alan Bates
    BC Cancer

Team members: 

  • Cheri Van Patten 
    BC Cancer
  • Stuart Peacock 
    SFU
  • Helen McTaggart-Cowan 
    SFU
  • Guy Faulkner
    UBC
  • Alina Gerrie
    BC Cancer
  • Nathalie LeVasseur
    BC Cancer
  • Rosemary Cashman
    BC Cancer
  • Kendra Zadravec
    UBC
  • G. Haukur Guomundsson
    UBC
  • Scott Lear
    SFU
  • Jeremy McAllister
    Physiotherapy Board of BC

The Nutrition and Exercise During Treatment (NEXT) Program is a long-standing collaboration (since 1999) between BCC and the UBC. In-person programming has been developed, research tested, and then offered to BCC patients. To meet evolving health needs, especially for British Columbians who live in rural and remote locations, coupled with the evolving needs for the current pandemic, we need to further develop tools to effectively shift into virtual models of care. This collaborative project will bring together a working group to plan and prioritize a research agenda to develop accessible and effective virtual (online) supportive care (exercise and nutrition programs) for people living with, and beyond, cancer in British Columbia. This collaboration will include a core working group of researchers (UBC, Simon Fraser and BCC), patient partners and people working in delivery and administration of clinical cancer care in British Columbia (Patient Partners, Allied Health Professionals, Oncologists, Nurse Practitioners, and Administrators).