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)

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)

Mobilizing falls prevention knowledge with patients and clinicians in British Columbia

Effective approaches to prevent falls exist, yet barriers to their uptake exist. These barriers include: 1) patient knowledge of best-practices for falls prevention; 2) geriatrician time and a geriatrician shortage in British Columbia (BC); and 3) access to Otago Exercise Program (OEP) training across BC. To mitigate some of these barriers, we propose a series of videos guided by patient, clinician and physiotherapist champions. The Falls Prevention Clinic team includes patient partners, geriatricians, and physiotherapist champions who deliver the OEP. A primary goal of this video series will be to: 1) increase awareness using accessible language of best practices for falls prevention; 2) increase referrals to physiotherapists for falls risk assessment from geriatricians; and 3) provide access to resources for physiotherapists who would like training in the delivery of the OEP. The intent of these videos is to prevent falls and thus promote healthy aging by: 1) facilitate improved patient understanding of how to prevent falls; 2) address the geriatricians capacity burden through increased physiotherapist referrals for falls risk assessment; and 3) foster translation of the OEP to physiotherapists across BC.


Team members: Tracy Dignum (UBC); Teresa Liu-Ambrose (UBC); Linda Li (UBC); Kenneth Madden (UBC); Naaz Parmar (UBC); Larry Dian (UBC); Catherine Chan (UBC); Alison Chan (UBC); Lillian Morishita (Retired); Cassandra Adjetey (UBC); Eleanor (“Jean”) Ko (Retired); Mohammed Esfahaad (Retired)

 

An iKT, interpretivist, feminist, multi-method study examining the experience of, and models of treatment for, acute postpartum mental illness

Postpartum depression is common, affecting 10-15% of women, and increases risk for suicide. Postpartum psychosis is rarer (approximately 1/1000 women), but is a psychiatric emergency. Women with postpartum psychosis or severe postpartum depression need care in hospital to protect their health, and the health of their families. Currently in Canada, these hospital stays separate women from their babies, which can be traumatic for mother and baby. In other countries, Mother-Baby Psychiatric Units (MBUs) admit both mother and infant for care. This study will investigate whether MBUs are suitable for Canada, or whether another model of care would be better for Canadian families. To do this, we will conduct three sub-studies. Sub-study 1 will amplify women’s stories of the experience of a hospital stay for postpartum mental illness in Canada. Sub-study 2 will describe the frequency and predictors of hospitalization for postpartum mental illness. Sub-study 3 will provide a rich picture of the MBU model of care through a case study of five international MBUs. By understanding how to best meet the needs of women and families living with serious postpartum mental illness, we aim to improve mental health outcomes across generations.

Implementation of a Canadian willingness to cross program: A strategy to increase access to kidney transplantation for highly sensitized patients

More than 20 percent of candidates on the kidney transplant waitlist are considered difficult-to-match for the already scarce resource of kidne y organs. This is because their immune system has previously been activated through pregnancy, blood transfusion, or prior organ transplants to produce a broad range of antibodies that limit their chances of finding compatible donors. These “highly sensitized” patients (HSP) face prolonged wait-times, reduced access to transplant, and an increased risk of death on the waitlist.

The main objective of this research is to implement a first-of-its-kind Willing to Cross (WTC) program. Under this national initiative, patients will be able to be transplanted across known antibodies against donors that are deemed to be at low risk of causing rejection. This strategy is anticipated to improve the chances of receiving a transplant while maintaining good patient outcomes. In addition, the study will follow patients with two cutting-edge immune assays that have been shown to detect rejection before kidney injury occurs. Recognizing that we serve a diverse patient community with different values and beliefs, we will also evaluate patient perception and readiness to adopt this new kidney allocation system.

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.

What gynecologic cancer patients want to know about gynecologic cancer research: Disseminating timely research evidence through recorded conversations between patients and research experts

Co-lead: 

  • Nicole Keay

Team members: 

  • Nicole Prestley
    Women's Health Research Institute
  • Lori Brotto
    Women's Health Research Institute
  • Helena Abreu do Valle
    UBC
  • David Huntsman
    UBC
  • Lien Hoang
    UBC
  • Jessica McAlpine
    UBC
  • Anna Tinker
    UBC
  • Siv Klausen
    Patient partner
  • Debra Walker
    Patient partner
  • Rose Au-Yeung
    Patient partner
  • Justine Greene
    General public
  • Samyak Sah
    SFU
  • Gina Ogilvie
    UBC
  • Laurie Smith
    UBC
  • Stephanie Lam
    UBC
  • Gavin Stuart
    UBC

Patients with gynecologic cancer have articulated a strong desire for accessible research evidence. We are proposing to work with patients to develop five short videos on gynecologic cancer covering topics in prevention, diagnosis, treatment and living well with, and beyond, gynecologic cancer. These videos will be ‘hosted’ by the patient partner, and will consist of recorded, structured conversations (taking place virtually using zoom) between a gynecologic cancer patient and a gynecologic research expert. Where necessary, additional information will be interspersed using powerpoint slides and infographics to improve clarity and maximize evidence sharing. By having our patient partners 'host' these conversations, it will ensure that content is relevant to patients. We hope that these videos will improve the lives of gynecologic cancer patients in BC by: 1) Making it easy for patients to access information on the research happening here in BC that is directly relevant to their cancer care and journey; 2) Increasing awareness of opportunities to participate in gynecologic cancer research in BC; and, 3) Providing easy access to the stories and experiences of other gynecologic cancer patients.

CoBrA Community Brain Art initiative: Co-created brain health promotion with the Downtown Eastside community

Co-lead:

  • Christy Sutherland
    UBC

Team members: 

  • William Honer
    UBC
  • Skye Barbic
    UBC
  • Sari Raber
    Kilala Lelum
  • Andrea Jones
    UBC
  • Melissa Woodward
    UBC
  • Jacob Stubbs
    UBC
  • Lianne Cho
    UBC
  • Christopher Siu
    UBC
  • Will Panenka
    UBC

Brain disorders are underappreciated, modifiable drivers of daily challenges. Our team’s research includes the ten-year observational Hotel Study, which engages Downtown Eastside (DTES) residents affected by precarious housing, and has found high rates and significant consequences of traumatic brain injury, stroke and mental illness. To engage the community during the COVID-19 pandemic, innovative knowledge dissemination activities are needed. The two-part Community Brain Art (CoBrA) initiative is co-created with residents, healthcare providers and researchers in the DTES. CoBrA aims to share local brain health research and community resources with DTES residents. First, we will co-design art kits with knowledge users, containing art supplies and brain health infographics. These kits will be distributed to residents to facilitate dialogue and visual expression of their experiences with brain wellness and injury. Submitted art and health resources will be shared on our website. Second, we will co-produce a mural with local artists to convey brain health recommendations. Reach and effectiveness will be assessed by kit participation, website access and pre- and post-engagement surveys by text message and peer-facilitated sessions.

Utilizing a multimodal optical device to detect cancer

Two out of every five individuals will develop cancer during their lifetime. My research program focuses on cancer prevention and diagnosis, using skin cancer as an initial platform. Skin cancer accounts for two thirds of all cancer cases and is an easily accessible organ to study using optical devices. Biopsies are typically used to detect skin cancers. Disadvantages of skin biopsies include possible disfigurement and complications, lengthy processing time, and occasionally inaccurate or inconclusive results. As well in some patients that are at high risk, taking multiple biopsies may not be practical and is costly. In this proposal, we will determine if an optical device combining different optical methods can readily and accurately detect skin cancer.

Ultimately, we expect this optic device to provide a noninvasive and instantaneous diagnosis that would be available to the patient and clinician at the bedside. This novel method of combining different spectroscopy methods to be able to collectively evaluate skin lesions and help in the diagnosis of skin cancer would be a significant achievement in the screening of cancer. Early and improved detection using a noninvasive method would help to improve morbidity and mortality in those affected with cancer. 

A culturally safe pathway for scaling up a patient-centred mHealth technology in northern BC (WelTel Haida Gwaii)

Co-leads:

Executive sponsor:

  • Ciro Panessa
    Northern Health

Rural and remote areas in northern BC experience a greater burden of chronic disease than the rest of the province. The management of chronic disease in primary care settings on Haida Gwaii, in particular, is limited by remoteness and the lack of continuity in outpatient care. The delivery of care to diverse populations in northern BC, including First Nations, requires innovative approaches due to constraints on health system resources.

WelTel is an evidence-based digital health intervention (EBI) that links patients and care providers via text messaging to enhance the timeliness, access to, and quality of chronic disease care. With funding from Doctors of BC, WelTel currently serves 120 patients at Xaayda Gwaay Ngaaysdll Naay/Haida Gwaii Hospital & Health Centre (XGNN). Feedback has been positive on its usefulness, but it has not yet been adopted widely and equitably for patients with chronic disease.

Scaling up WelTel could improve chronic disease management in rural and remote areas of northern BC, address BC health system priorities and advance inter-organizational and patient-centred care. Establishing a process for implementing health innovations that are culturally appropriate will speed up adoption of EBIs in the future.

The goals of this research are to enroll a majority of chronic disease patients in WelTel at XGNN, to expand across primary care on Haida Gwaii, and serve as a model for rural BC. This will include conducting rigorous implementation science research, and a continuation of existing work to construct a mobile health EBI evaluation tool. This will be modified from the Consolidated Framework for Implementation Research (mCFIR) tool which identifies facilitators and barriers associated with expansion to ensure equitable access for all patients.

The mCFIR tool will be complemented with the He Pikinga Waiora Implementation Framework (HPWIF), a community-based participatory framework rooted in Indigenous self-determination. HPWIF will explore critical cultural intricacies and direct the ethical conduct of research in these communities.

This research is poised to explore the complexities of providing care in Haida Gwaii and establish a culturally safe pathway for implementation of EBIs within the community and in similar settings.