Familial Hypercholesterolemia (FH) is the most common inherited disorder, with a prevalence of 1 in 250 Canadians, characterized by lifelong elevation in blood cholesterol leading up to 22-fold increased risk for heart disease. Despite this, in BC alone, more than 85 percent of cases are undiagnosed and only a minority receive appropriate treatment. A key component for improving care for this population is by increasing awareness through patient education, engagement and dissemination of recent FH research results. The purpose of this proposal is to organize an updated educational forum on FH, focusing specifically on family-based care and women’s health, including lectures by patients, physicians, dietitians and genetic counsellors, and interactive group sessions including patients’ testimonials. This forum will provide an opportunity for patients to learn about new developments in diagnosis and treatment of FH, including management in special populations, such as pregnant women and children. The goal is to empower patients to become advocates for the FH community by increasing awareness of the disease and recognizing the importance of screening their families for early identification, treatment and ultimately heart disease reduction.
Team members: Iulia Iatan (UBC, Centre for Heart and Lung Innovation); Nancy Pratt-Najera (St. Paul’s Hospital); Lubomira Cermakova (St. Paul’s Hospital, Healthy Heart Program Prevention Clinic); Durhane Wong-Rieger (Canadian Organization for Rare Diseases).
Around 86,000 Canadians live with spinal cord injury (SCI), a complex condition that leads to serious and costly healthcare challenges. Pressure injury (PI) is a common and potentially life threatening complication of SCI, and over 90 percent of people with SCI will experience at least one PI in their lifetime. Persons with PI and SCI require ongoing care from a range of healthcare providers and may experience mobility challenges, mental health concerns, and social isolation. While there is growing knowledge about how to manage PIs, little is known about the experiences of persons with SCI. Through our previous research, we have learned about how people with SCI experience PI and the challenges faced when accessing healthcare. This Reach award will allow us to raise awareness of these issues and to share information that can be used to improve healthcare services. Our team plans to work together to: 1) Create and share educational resources (e.g. videos, pamphlets, and workshops) that raise awareness of PI in SCI; 2) Share lived experiences and best practices; and 3) Provide an opportunity for ongoing learning that supports improvements and innovations in care.
Team members: Nassim Adhami (UNBC – School of Nursing); Shayna Dolan (UNBC – School of Nursing); Kiran Ghag (UNBC – School of Nursing); John Chernesky (Praxis – Spinal Cord Institute); Spring Hawes; Scott Donia (Praxis – Spinal Cord Institute); Nelly Oelke (UBC – Okanagan); Shannon Freeman (UNBC – School of Nursing); Nicola Waters (Thompson Rivers University); John Cobb (Vancouver General Hospital).
Advances in gynecologic cancer research is rapidly evolving resulting in new prevention strategies, diagnostic tools, treatment modalities, and survivorship care. Patients and survivors have consistently shared the need for accessible and patient-oriented strategies to access the latest research evidence. We aim to co-create a knowledge translation platform with gynecologic cancer patients to share research on prevention, diagnostics, treatment, and survivorship of gynecologic cancers. This platform will include two knowledge translation tools that have been co-designed and inspired by patient partners. The first tool is a new podcast series on the Gynecologic Oncology Sharing Hub (GOSH Podcast) using a storytelling/investigative approach to share the latest gynecologic cancer research. The second tool is a new Gynecologic Cancer Research Blog featuring a series of different articles written by trainees and patient partners. These tools have been created and designed by patients who will continue to share their insight to ensure that the content is relevant to patients. This platform will also serve as an opportunity for trainees to develop science communication and knowledge translation skills.
Team members: Gillian Hanley (UBC); Amy Jamieson (UBC); Janice Kwon (UBC); Lesa Dawson (UBC); Blake Gilks (UBC); Jessica McAlpine (UBC); Brad Nelson (BC Cancer Victoria – Deeley Research Centre); Deborah Money (UBC); Elisabeth McClymont (UBC); Aline Talhouk (UBC); Anna Tinker (BC Cancer Vancouver); Michelle Woo (UBC); Stephanie Lam (UBC); Alexandra Lukey (UBC); Celine Laumont (BC Cancer Victoria – Deeley Research Centre); Siv Klausen (Gynecologic Cancer Initiative); Nicole Keay (Gynecologic Cancer Initiative); Ariadne Hiller (Gynecologic Cancer Initiative); Nancy Cleveland (Gynecologic Cancer Initiative).
Type 2 diabetes (T2D) is traditionally viewed as a chronic, progressive condition that someone has for life. Our research, and that of others, now shows it is possible to drive T2D into remission through specific diet and lifestyle changes. T2D remission means that blood sugars are back in the normal range with no medications needed; it represents a new way of viewing T2D which provides hope for those affected. Research shows T2D remission is achievable, but now we need a public outreach program to alert as many British Columbians as possible to this news and connect them with helpful resources. We will implement a KT initiative including: 1) Video and graphic media products that we create; 2) Earned mainstream media coverage; and 3) A social media campaign, which amplifies the first two elements and drives viewers to a web platform, RemissionPossible.ca, which will connect them with T2D remission resources. Given how broadly T2D affects British Columbians and what a “feel good” story this is, we anticipate significant interest with mainstream and social media. By carefully tracking results (impressions and web traffic), we will improve our reach and learn valuable lessons to inform future KT initiatives.
Team members: Damien Gillis; Barbara Oliveira (UBC Okanagan); Tom Elliot (UBC); Sean McKelvey (Institute for Personalized Therapeutic Nutrition, not-for-profit); Marc Pelletier (Institute for Health Systems Transformation and Sustainability, not-for-profit); Deanne Taylor (Interior Health); Kathleen Martin Ginis (UBC Okanagan and Centre for Chronic Disease Prevention and Management); Krista Lamb; JJ Belanger; Chris Xi.
Genetic knowledge is important for Jewish people who are especially susceptible to risks of genetic mutations of the BRCA genes and BRCA consequences which increase the lifetime risk of developing breast, ovarian, prostate, and pancreatic cancers, lymphoma and melanoma. The earlier an individual knows that she/he has the mutation, the better the chances for cancer risk mitigation and monitoring. In the general young adult Jewish population, there is often little motivation to learn about BRCA mutations; however, learning about BRCA mutations is most pertinent when one is young and healthy and able to take steps to prevent cancers. Our aim is to develop an animated “explainer” video to improve awareness and education about BRCA among the local young adult population in partnership with young adults in the BC Jewish community. This video is envisioned as brief (60-90 seconds), entertaining, animated video offering “a taste” of information about the BRCA genes and their importance for young people especially those with Jewish heritage. We will use an evidence-based dialogic, CBPR model to engage young people in BC to help us with video content and dissemination which will be multi-faceted and youth-driven.
Team members: Catriona Remocker (BRCAinBC); Beti Thompson (BRCAinBC); Stephanie Lam (Gynecologic Cancer Initiative).
The Environment, Community Health Observatory (ECHO) Network is a five-year research program (2017-2022) bringing together over 130 researchers, trainees, knowledge exchange partners, and community members. ECHO Network members have developed and refined a suite of integrative tools and processes aimed at taking notice of, analyzing, and responding to the health impacts of resource extraction, with specific emphasis on rural, remote and Indigenous communities. Acknowledging the existing research to action gap, as well as the applicability of many of our tools to addressing the climate crisis (an identified area of focus in health authorities), we are interested in hosting a reciprocal learning and sharing event between health researchers (ECHO Network), research users (health authority personnel), and trainees. We aim to: 1) Foster direct and reciprocal knowledge exchange pathways between researchers and health authorities to share and extend the reach of climate change-related tools; 2) Adapt research outputs to increase applicability of tools for health authorities; and 3) Promote intersectoral knowledge exchange training and capacity building among trainees, researchers, and health authority personnel.
Team members: Margot Parkes (UNBC); Angel Kennedy (SFU); Tim Takaro (SFU); Dawn Hoogeveen (SFU and First Nations Health Authority); Jordan Brubacher (SFU); Dionne Sanderson (First Nations Health Authority); Cody Thomas (First Nations Health Authority); Maery Kaplan-Hallam (First Nations Health Authority); Maeve Leduc (SFU); Sandra Harris (UNBC); Sue Pollock (Interior Health); Sandra Allison (Island Health); Christiana Onabola (UNBC); Katie Bauder (First Nations Health Authority); Holly Clermont (First Nations Health Authority); Diana Kutzner (First Nations Health Authority); Vishal Jain (Fraser Health); Krisztina Vasarhelyi (Vancouver Coastal Health); Raina Fumerton (Northern Health); Lars Hallstrom (University of Lethbridge); Lindsay Galway (Lakehead University); Celine Surette (Universite de Moncton).
The objective is to develop a knowledge translation and mobilization plan for exercise recommendations for people with bone metastases. In advanced cancer, cancer can spread to bone, called ‘bone metastases’. This makes bones weaker and more likely to break, leading to pain and disability. Physical activity can help people living with bone metastases to maintain their independence and engage in more activities they enjoy. However, health care professionals, exercise professionals and people living with bone metastases (user groups) are uncertain about how to safely engage in physical activity. In 2022, expert recommendations were published on physical activity specifically for people with bone metastases. Without specific tools for user groups and communication plans, it could take years for these recommendations to be taken up into practice. We will bring together people who are part of the intended user groups across British Columbia to “co-design” the best way to get information about the recommendations to people who need it, in the most useful way possible. This project aims to raise awareness about the recommendations and start the process to increase use of the recommendations for people living in British Columbia.
Team members: Christine Simmons (BC Cancer Agency); Alan Bates (BC Cancer); Cathy Clelland (BC Cancer); Sian Shuel (BC Cancer); Leah Lambert (BC Cancer); Sarah Budding Smith (BC Cancer); Chiara Singh (Fraser Health & Physiotherapy Association of British Columbia); Hardip Jhaj (British Columbia Association of Kinesiologists); Rebecca Tunnacliffe (BC Recreation and Parks Association); Tracy Torchetti (Canadian Cancer Society); Sarah Weller (BC Cancer); Stephanie Skourtes (Women’s Health Research Institute); Kirstin Lane (Exercise Science, Physical & Health Education University of Victoria); Sarah Neil-Sztramko (National Collaborating Centre for Methods and Tools); David Langelier (University of Toronto and Princess Margaret Cancer Centre); Michelle Nadler (Princess Margaret Cancer Centre); Samantha Myers (UBC – Rehabilitation Sciences).
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)
People who are vulnerable and marginalized such as those who have substance use disorders, mental illness, or are homeless are at high risk of death. Our research shows that they could benefit from palliative approaches to care but the inner city workers who most care for them like housing and harm reduction workers do not have much support and knowledge related to palliative approaches to care. We have worked for several years with a community-based action team to integrate palliative approaches to care into their work and have developed an educational toolkit prototype with them. In this Reach project, we propose to the funds to complete our user-centered design to ensure that toolkit is developed in ways that are relevant and useable for the intended audiences. Specifically, we will (a) turn the toolkit content into user friendly resources, videos and graphics, (b) engage community-based peer reviewers to provide feedback, and (c) develop and implement a dissemination plan for uptake. We anticipate with better prepared and supported inner city workers, people who are vulnerable and marginalized will have better outcomes at the end-of-life such as access to palliative care services when needed.
Team members: Jonathan Schmid (Victoria Hospice Society); Ashley Mollison (University of Victoria); Kara Whitlock (University of Waterloo); Piotr Burek (Vancouver Island Drug Checking Project); Robyn Kyle (Victoria Cool Aid Society); Annie Do (Victoria Hospice Society)
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
