Co-developing a digital health systems research program to support cultural safety and health equity for Two-Spirit, transgender and nonbinary patients in British Columbia

Better and more inclusive care is dependent on including patient perspectives or “voice.” Yet, patient voice is rarely included in the design, modification or implementation of digital health systems (DHS) such as patient portals or electronic health records. As a result, DHS are rarely embraced by patient populations who could have the greatest benefit.

For Two-Spirit, transgender, nonbinary and other gender-diverse people (Trans+), this lack of voice is made worse by inaccurate DHS representations of gender identities. Negative healthcare experiences can discourage Trans+ patients from attending or returning for future visits.

Our collaboration includes Trans+ people, Trans Care BC, and other researchers. We will co-develop a program of research that brings patient voices into the design, modification, and implementation of DHS. The project extends our ongoing work to improve representation in DHS. This project is timely given the provincial government’s recent implementation of Health Gateway, a patient-accessed DHS allowing patients access to their health records.


Team members: Lorraine Grieves (Provincial Health Services Authority); Marcy Antonio (University of Victoria); Francis Lau (University of Victoria); Lindsay MacNeil (Trans Care BC); Quinn Bennett (Trans Care BC); Kelly Davison (University of Victoria); Roz Queen (University of Victoria); Aaron Devor (University of Victoria); Patient Partner TBA (Community Member)

Cancer and aging research engagement: Identifying priorities to enhance research and care of older adults with cancer and their caregivers

Cancer is most common amongst older adults. Older adults with cancer have distinct needs due to underlying health conditions and social situations, which may include a lack of social and financial supports. These factors often affect their ability to manage treatments, cope with treatment side effects, and make health care decisions. For older adults who do not speak English, have limited knowledge about the health care system, or have poor understanding of health or illness; navigating the cancer system is even harder. Older adults are often cared for by informal caregivers, such as family members, due to limited resources or services available to support older adults with cancer in the community. Caregivers face challenges trying to balance their caregiver role, not only for the older adult, but also for their younger dependents; work; and their own health needs.

Through virtual meetings and priority setting work, we will achieve the following goals: establish partnerships between older adults, caregivers, and diverse seniors’ groups; identify key research priorities to improve cancer care for older adults and their caregivers in BC; and develop a five-year research agenda to improve care for older adults with cancer.


Team members: Caroline Mariano (BC Cancer); Bonnie Leung (BC Cancer); Lorelei Newton (University of Victoria, and Canadian Association of Nurses in Oncology); Daniel Renouf (BC Cancer); Sabrina Wong (UBC); Lisa Quay (Jewish Community Centre); Keiko Funahashi (Tonari Gumi); Anthony Kuperschmidt (West End Seniors Network)

Reimagining gynecologic cancer survivorship: Creating a provincial strategy for survivorship research and care in British Columbia

In Canada, two-thirds of people diagnosed with cancer today will be long-term cancer survivors. With advances in early detection and improved treatment, and an ageing population, this number is expected to continue to rise highlighting the urgency for improved strategies to enhance the well-being of individuals, and their families, living with and beyond cancer. In partnership with patients and families, and the clinical and scientific community in BC, we plan to hold a series of stakeholder events and surveys that will address the impact of a gynecologic cancer diagnosis and treatment on the mental health, cognition, financial burden, and sexual health of those affected. We will also examine the impact of hereditary cancers and patient education/navigation to improve upon a patient’s journey through their cancer diagnosis and treatment. Through this work, we will map out the clinical and research resources available across the province to support a long-term research strategy and plan. By putting patient and family voices and experiences at the centre of the strategy, it will enable our research team to develop a provincial strategy that is biologically-relevant and socio-culturally informed.


Team members: Siv Klausen (UBC); Nancy Cleveland (Gynecologic Cancer Initiative); Nicole Keay (Gynecologic Cancer Initiative); Stephanie Lam (UBC); Jocelle Refol (Simon Fraser University); Gavin Stuart (UBC); Michelle Woo (UBC); Nicole Prestley (Women’s Health Research Institute); Lori Brotto (Women’s Health Research Institute); Janice Kwon (UBC)

Kitchen table justice: Co-developing Indigenous-informed food justice participatory action research strategy to support holistic health and redress health inequities with paroled women in BC

This grant will support research planning with women who have been recently incarcerated and will directly support future research guided by Indigenous approaches to holistic health and health equity through food-based program development. We will build relationships with paroled research users through the making and sharing of food, and the inclusion of research users, stakeholders and Indigenous Elders in all activities. Specifically, we will: (i) conduct a literature synthesis on the potentials of food justice to support holistic health equity for women on parole, and (ii) meet bi-weekly to: (a) collaboratively develop a terms of reference and governance structure that outlines team roles and responsibilities and decision-making processes; (b) engage in co-learning about food-related health and social inequities to develop a shared understanding of the potentials of food to support health; and (c) explore potential solutions and actions to redress overlapping health, prison and food inequities. Additionally, we will: (d) collaboratively plan and develop a grant application to support subsequent research to co-develop a food justice health intervention with and for women leaving prison in BC.


Team members: Angel Willard (Elizabeth Fry Society of Greater Vancouver); Kelsey Timler (UBC); Lisa Bowden (Elizabeth Fry Society of Greater Vancouver); Nyki Kish-Field (University of Fraser Valley); Lyana Patrick (Simon Fraser University); Valerie Napoleon (University of Victoria)

Exploring Indigenous community access to airway health prevention and care: Towards the development of community-driven interventions

Indigenous peoples across Canada continue to be disproportionately impacted by respiratory diseases (RD) (i.e. asthma, COPD, long COVID); however, there is limited evidence describing their Indigenous peoples respiratory healthcare needs and ways in which respiratory healthcare services can be improved. Given this knowledge gap, this project seeks to engage Indigenous peoples with RD to understand their experiences living with RD; to explore Indigenous peoples’ healthcare experiences; and to identify promising practices that can improve the treatment experiences and outcomes among Indigenous peoples with RD. In order to accomplish this, we plan to hold a minimum of five talking circles with Indigenous peoples with RD across urban and rural areas of the Vancouver Coastal Health (VCH) region. A graphic facilitator will guide a journey mapping exercise with community members in order to understand community members’ experiences when attempting to access services, while also elucidating promising practices in the treatment of RD. In addition to the benefits that this project may have for the health of Indigenous peoples in the VCH region, findings also have implications for Indigenous peoples living in other parts of British Columbia.


Team members: Christopher Carlsten (UBC and Vancouver Coastal Health Research Institute); Andreas Pilarinos (Vancouver Coastal Health and UBC); Shannon Field (Vancouver Coastal Health and UBC); Karen Rideout (Vancouver Coastal Health Research Institute); Pat Camp (UBC); Phalgun Joshi (Vancouver Coastal Health Research Institute); Shiloh Joe (Sechelt First Nation); Coreen Paul (Musqueam First Nation); Michael Dumont (Lu’ma Medical Centre); Krisztina Vasarhelyi (Vancouver Coastal Health Research Institute and Simon Fraser University); Roberta Price (Snuneymuxw and Cowichan First Nations); Leslie Bonshor (Vancouver Coastal Health Research Institute and Simon Fraser University;)

Digital health to guide the transition to menopause: Recognizing normal and abnormal changes during reproductive aging

During the years leading up to menopause, women often experience menstrual cycle and flow changes. This is usually part of normal aging, but can also be the first symptom of endometrial cancer, the most common gynecological cancer in Canada. Few women are aware of the risk factors for endometrial cancer, can recognize abnormal bleeding, and/or seek medical help. Predicting cancer risk and determining which abnormal bleeding is associated with endometrial cancer is a top priority for clinicians and women alike, because if detected early, this cancer is curable and has exceptional outcomes. Digital health technology (e.g. mobile phones apps) and analytics can help women track and monitor risk factors and symptoms and be alerted when suspicious patterns arise. In this project, we will collaborate with women in the community, patients, clinicians, and women’s health researchers to co-design digital health tools that can help women learn about and assess their risk factors for endometrial cancer, discern symptoms of cancer from those of normal aging, and provide opportunities for education, prevention, and early detection, especially among women at high-risk for cancer.


Team members: Jerilynn Prior (UBC); Lauren Tindale (UBC); Malak Ibrahim (UBC); Lori Brotto (UBC); Gurm Dhugga (UBC); Shirley Weir (Community Partner); Ali Zentner (Revolution Medical Clinic); Elise Abi Khalil (UBC); Shanzhao Wang (OVCARE, BC Cancer Agency); Sabrina Wong (UBC); Candice Taguibao (Women’s Health Research Institute); Nicole Prestley (Women’s Health Research Institute)

Collaborating with Indigenous northern communities to develop a SmartMom prenatal education texting program for teens

Teenage pregnancy is associated with a higher risk of poverty, mental health problems, and substance use. In the Northern Health Authority, rates of teen births are twice as high as elsewhere in BC. Prenatal education is known to reduce unhealthy pregnancy outcomes, but few women attend in the north and the number of teens that attend is unknown. As an alternative, we have developed a prenatal education program, (SmartMom), that delivers three SMS text messages each week related to participants’ week of pregnancy. Over one year, we will engage and convene partners in Northern Health to develop a supplemental stream of messages that is relevant and engaging for teen mothers. Through two information gathering meetings in each of several communities, we will develop content that is age-appropriate and appealing to young mothers. We will also develop a Youth Advisory Council to review our messaging and plan evaluation activities. We plan to monitor teen participation in the program and measure changes in knowledge, adoption of healthy behaviours and rates of adverse pregnancy outcomes. While the primary focus is not Indigenous health, we aim to ensure Indigenous teens and their unique lived experiences are considered in our program.


Team members: Randi Parsons (Northern Health); Shaina Pennington (UBC); Vanessa Salmons (Northern Health); Jennifer Murray (UBC)

Walking together in the same direction: Co-developing a culturally rooted model for diabetes prevention for Coast Salish and Nuu-Chah-Nulth communities of southern Vancouver Island

The nine Coast Salish and Nuu-Chah-Nulth nations of southern Vancouver Island have supported diabetes prevention and management with a variety of programs; however, the rate of diabetes continues to rise. Our goal is to engage with the nine First Nations communities through one-day gatherings to identify the assets, experiences, barriers, and gaps within each community, and integrate culture and language into a community-led model for diabetes prevention, treatment and management. We aim to co-create a framework for a diabetes prevention and care model that is community-driven, improves diabetes services at the local level, and supports nation-based self-determined approaches to diabetes prevention and management. It is imperative that we prioritize this work and align our efforts to explore a collaborative, decolonized approach to diabetes care. Our model will enhance the culture and resilience that is already present within our communities and bridge gaps in care to develop a diabetes strategy that can support our question of “How can we be who we are as First Nations people while integrating our Traditional knowledge with the best of Western approaches to diabetes care?”.


Team members: Valerie Bob (Simon Fraser University); Gwen Underwood (Saanich First Nations Adult Care Society); Marie Va’a (Tsartlip First Nation); Emily Doehnel (Tsartlip First Nation); Lois Williams (Tsawout First Nation); Kelli Telford (Tseycum First Nation); Kinsey Goertz (Tseycum First Nation); MaryAnn Daniels (Pauquachin First Nation); Jessie Jim (Songhees Nation); Hayley Moreau (Songhees Nation); Chris McElroy (Songhees Nation); Jeneen Hunt (Esquimalt Nation); Stephanie McMahon (Esquimalt Nation); Krista Johnny (Scia’new First Nation); Angie Gibson (Scia’new First Nation); Rose Dumont (T’sou’ke Nation); Jennifer Routhier (T’sou’ke Nation); Grant Robinson (Island Health); Penny Cooper (Island Health); Ashley Simpson (University of Victoria); Jennifer Murray (UBC); Brenda Bartleman (Tsartlip First Nation); Judith Atkin (Island Health); Amanda Henry (Island Health); Carol Hill (Pacheedaht Nation); Tara Claxton (Pacheedaht Nation); Rachel Dickens (Nuu-Chah-Nulth Tribal Council); Mathew Dueck (First Nations Health Authority)

Civility matters: Co-creation of an online toolkit for long-term care home staff

In long-term care (LTC) homes, the number of staff working on a shift is essential to quality care provision; however, it is increasingly apparent that who is on shift is just as important. Quality care is difficult to achieve when staff do not routinely engage with one another in a positive, or civil, manner. Our research, conducted pre-pandemic, revealed the impact of uncivil workplace behaviours on care delivery and staff well-being, an impact that has only been exacerbated by COVID-19. A positive workplace culture requires the cooperation of front-line and leadership staff and access to professional development opportunities that help staff instill and contribute to a collaborative and respectful workplace. Comprised of researchers and union and industry partners, our project team will co-create an online toolkit to support staff to address workplace (in)civility in LTC and promote supportive and collaborative workplace relationships at their worksites.

Specific objectives include: 1) Raising awareness about the nature and impact of workplace incivility in LTC on staff well-being and care delivery; 2) Creating opportunities for staff to engage with practice-based scenarios and resources for addressing workplace (in)civility.


Team members: Saleema Dhalla (SafeCare BC); Jennifer Lyle (SafeCare BC); Leah Laing (UBC); Heather Cooke (UBC); Rhonda Croft (BC Nurses’ Union); Hanif Karim (BC Nurses’ Union); Lisa Kelly (Sienna Senior Living); Cina Oppel (BC Government & Service Employees’ Union); Megan Scott (BC Government & Service Employees’ Union); Georgina Hackett (Hospital Employees’ Union); Anne Bull (Hospital Employees’ Union)

 

HIV In My Day: Destigmatizing HIV through theatre, living history, and storytelling

Despite advancements in HIV treatment and care, HIV stigma remains a challenge today. “HIV In My Day” is a community-based research project that has collected and digitally archived 100+ interviews with long-term HIV survivors and caregivers across British Columbia. It is crucial to share these stories more widely with communities who are still disproportionately impacted by HIV/AIDS as well as healthcare providers who serve these communities in order to continue destigmatizing HIV.

In collaboration with “In My Day”, a verbatim theatre production adapted from these stories, our proposed knowledge translation activities will be part of a larger arts-based event in December 2022 at The Cultch in Vancouver, including post-show interactive audience engagement; multimedia presentations of the findings from “HIV In My Day”; intergenerational forums with “HIV In My Day” participants; storytelling workshops for people living with HIV; performances of the “Viral Monologues”.

Together these activities will benefit attendees, including community members and healthcare providers, by teaching HIV history, building storytelling skills, and fostering intergenerational dialogue around HIV within and between affected communities.


Team members: Ben Klassen (Community-Based Research Centre); Michael Montess (University of Victoria); Kelli Stajduhar (University of Victoria); John Paul Catungal (University of British Columbia); Leah Tidey (University of Victoria); Rick Waines