The proposal aims to create extended lay abstracts for approximately 80 research papers produced by our lab that focus on Interventional Brain Medicine technologies. These abstracts will translate complex research outcomes into easily understandable summaries for non-specialists. This project aims to disseminate knowledge away from an in-group of academics and towards the broader population and public policy it hopes to serve. Each week, trainees, patient partners, and research co-leads work in tandem through an iterative process of revisions and open discussions to produce easily comprehensible layman translations of technical academic work. These lay abstracts serve the purpose of narrowing the knowledge-practice gap by encouraging public engagement in research through their publication on open-access platforms such as X and Research Gate as well as the lab’s website and monthly newsletter. In the creation of lay summaries and KT, public and professional perception for these novel methods is to be improved, guiding their future accessibility and easing the burden of illness on a scale both within and outside of BC through the empowering nature of open collaboration with the public.
Year: 2024
Art for connection and wellbeing: Integrated Knowledge Translation to support health literacy with and for men in prison in BC.
Our team, co-led by incarcerated Research Users, will strengthen, expand and finalize arts-based and trauma-informed health literacy content, in partnership with BC Researchers working to address overlapping public health emergencies that disproportionately impact people in prison and parole. Building on previously created digital literacy and art creation and inspiration content, our team will host two Health Fairs – an initial event in the community will welcome BC Health Researchers and trainees, and criminalized Researcher User-artists who will provide feedback and expert guidance on the accessibility and acceptability of presented public health information. Resulting knowledge will be captured using arts-based methods, and outputs will be uploaded onto Tablets and shared in a prison. A final Health Fair will be hosted in the prison, providing opportunities for health Researchers, Trainees and Research Users to strengthen shared understandings of prison health and public health emergency priorities, and empower health advocacy with and for people in prison. The Tablets will be left in the prison, and feedback mechanisms built into the software will support ongoing learning, reciprocal benefit and public health advocacy.
“A Day in the Life of a Longhauler”: Using Photography as a Tool for Long COVID Awareness
3.5 million Canadians (9% of the population) experience Long COVID symptoms. Every Canadian knows someone affected, whether it is a mild or disabling case, impacting family, friends, and communities. Many patients and the people who provide care for them have identified the need to increase awareness and recognition of Long COVID in Canada. Our project addresses this community-identified priority by using photography to showcase the visible realities of this ‘invisible illness’ in British Columbia.
“A Day in the Life of a Longhauler” is a photography exhibition co-produced and presented at the Museum of Vancouver that will display photos taken by Longhaulers (people with Long COVID) to highlight their daily lived experiences. To guide visitors through the exhibition, accompanying text integrated throughout the photo collection will provide information and resources about Long COVID. Opportunities for museum visitors to document their own experiences and feedback on the event and in the exhibition space will also be provided.
By using a community participatory arts-based approach we will promote education and informed discourse surrounding Long COVID to reduce shame and stigma, empower patient voices, and advocate for support.
Empowering Families as Partners: Crafting a Toolkit for Effective Care Conference Participation
In LTC homes across the province, there has been a shift towards making the resident and the resident’s essential visitors (EVs) a key partner in care. One way that LTC homes can facilitate this change is through care conferences. Care conferences are collaborative care planning meetings that include health care providers, the resident and EVs to discuss and agree on a unique person-centred care plan to optimize quality of life. The success of care conferences relies on all parties being knowledgeable about the goals and purpose and taking an active role in the discussion. However, work by Dr. Baumbusch outlines that many EV’s are often not properly informed;aware;educated of how to meaningful participate in this process. Productive outcomes rely on the facilitation of mutual exchanges of information between participants, empowering all parties to engage as equals. Our team, comprised of academic researchers, embedded health care researchers, end users and industry partners will co-create on an online toolkit to empower EVs during LTC care conferences. Specific objectives include:
1) Raising awareness of the LTC care conference process for EVs
2) Empowering EVs to feel informed and confident in their role in LTC care conferences
Genetic Lipid Disorders and Premature Atherosclerotic Cardiovascular Disease: Raising Awareness to Save Lives
Familial Hypercholesterolemia (FH) and elevated lipoprotein(a) [Lp(a)] are two of the most common genetic lipid disorders: 1 in 311 Canadians have FH and 1 in 5 have high Lp(a). Affected individuals have a higher risk for heart disease and stroke, but both diseases remain underdiagnosed and undertreated. To improve care, increased awareness through education, engagement and dissemination of research findings is vital. The goal of this event is to organize an Educational Patient Engagement Forum focusing on recent developments in the screening, diagnosis and treatment of FH and high Lp(a), and management in specific populations (Indigenous communities and children). The forum will include lectures by those with lived experiences, clinician-scientists, Indigenous researchers, allied health providers, and an interactive session with patients’ testimonials. FH and Lp(a) Canada Registry members will also discuss identification of individuals with inherited lipid disorders, initiatives and resources for patients and health care professionals. The forum will empower patients to become advocates, increase awareness of these diseases, and recognize the importance of screening for early identification, treatment and heart disease reduction.
Evidence as a community ASSET – Establishing a circular data model to support integrated knowledge exchange in the Assessing Economic Transitions (ASSET) Study
The proposed project will expand and evaluate a circular data model that supports health and social service providers to directly access and use data from the Assessing Economic Transitions Study (ASSETS). ASSETS is a mixed-methods evaluation of the impacts of low-threshold economic opportunities for the health and economic well-being of People with Lived and Living Experience of Substance Use (PWLLES) in Vancouver’s Downtown Eastside (DTES) neighbourhood. Since 2019, ASSETS has featured multi-stakeholder engagement and an Integrated Knowledge Translation and Exchange (iKTE) platform. The proposed project seeks to expand this iKTE platform through a circular data model featuring: (1) the scale up of the study data dashboard and data literacy educational modules; (2) development of a web-based resource repository; and (3) evaluation of the effectiveness of this circular data model. Consultations with health and social service providers will refine the data dashboard, educational modules, and website. Partner feedback will support a process evaluation that produces evidence of progress on organizational outcomes. This project builds community capacity for using research data to directly inform health and social service provision.
Mobilizing Menopause Research in BC: Disseminating Results of the HER-BC Study with the Public and Practitioners
The “HER-BC” study explored transitions throughout menopause for mid-life women in BC. The next step is to share the knowledge gained during this study, and promote awareness and use of this new knowledge amongst the public and healthcare providers. To reach as diverse an audience as possible, we will undertake a series of knowledge sharing activities with researchers and research users, including people with lived;living experience (PWLE) of perimenopause and menopause. Together, we will plan and put in place a series of knowledge translation (KT) activities that are widespread and varied in format. We aim to reach two target audiences: 1) PWLE and the public, and 2) health care practitioners. Planned KT activities include Facebook Live events, online webinars, podcasts, video interviews, and in-person presentations. We will also create a communications toolkit to share with community organizations, professional associations and the public. They will distribute findings of HER-BC to their networks, including on social media. The proposed KT activities aim to empower women to make informed decisions about menopause care, and to support health care practitioners to provide responsive and appropriate menopause care and services.
“Safety Lenses”: An Exhibition from the Community Voices on News Coverage of Police Violence Project
This proposal supports two phases of an art exhibit that brings attention to police violence as a source of public health inequity. Policing practices in Canada have long caused disproportionate harm and can extend to secondary health impacts caused by media exposure to violence. For over two decades, public health scholars in the U.S. have used a public health framing to improve understandings of health outcomes of, and the data that is collected on, police violence. This data is vital to track policing impacts, so if Canadians hope to understand the health outcomes related to police violence, Canadian health scholars will need to advocate for better information tracing and a public health approach to police violence. This proposal will support a community co-created art exhibit that examines health impacts of media exposure to police violence. The show will feature co-created works, an interactive mural, an infographic public report on the health impacts of police violence, a workshop, and a panel discussion with public health scholars. The in-person art exhibit will take place at Gallery Gachet in Fall 2024, the eight (8) subsequent presentations will share the findings to health and media scholars throughout B.C. and Ontario.
Extending the Reach of the Flipping Stigma on its Ear Toolkit: Translating and Transforming the Toolkit for the Chinese Community
The purpose of this knowledge translation project is to extend the reach of the Flipping Stigma on its Ear Toolkit, a research output that is a web-based education and advocacy tool developed by an Action Group of people with lived experience of dementia. Currently this toolkit (flippingstigma.com), which is focused on addressing dementia-related stigma and discrimination, is only available in English. This project will focus on translating and transforming the toolkit for the Chinese community. We will do this by working closely with a Knowledge Translation Team (KTT) of people with lived experience of dementia, care partners, health care professionals, and other members of the Chinese community. We will first arrange for a translation of the toolkit into Traditional Chinese characters. A beta version of the Chinese toolkit will be created online. Then our team will meet with the KTT over a series of online meetings to review the beta version. The goal of these KTT meetings will be to explore the beta version (translated) of the toolkit and help to transform it into a culturally relevant and sensitive tool for the Chinese community. As a final outcome of this project, a Chinese version of the toolkit will be officially released.
What healthy aging means to me: a community-collaborative knowledge mobilization initiative with, by, and for, women living with HIV.
UBC researchers, Ribbon Community, and local service organizations, such as Central Interior Native Health Society, will harness our collective experiences in supporting WLWH to host five women-centred knowledge mobilization (KM) events. Ribbon Community has supported the HIV community since 1983, with services including peer-to-peer programming, case management, and grocery support. Researchers at UBC are investigating healthy aging in women living with HIV, from cell-to-society, in the community-based British Columbia CARMA-CHIWOS Collaboration (BCC3) study. We aim to host a series of “mini-retreats” – or full-day KM events that will be held in natural settings (e.g. Loon Lake). Here, WLWH and organizers will share nourishing food and discuss research findings through interactive activities surrounding the theme “What is healthy aging.” Events will take place in the five geographical regions visited by the research team during prior study enrollment. KM topics will focus on women’s sexual and reproductive health as they age, with specific topics chosen in consultation with WLWH. Participants will leave each event with a lay-language KM summary and an appreciation bag of health-promoting items.