Community & Citizen Engagement
CanCURE has established a Community Consultants group with representatives from across Canada. These dedicated individuals provide the perspective of the community in our internal review and decision making process throughout the duration of the CanCURE 3.0 program.
Knowledge Mobilization and Community Outreach
Since its inception, CanCURE has put together an integrated knowledge mobilization (KM) approach that involves:
o “Push” strategies (activities that “push” information to the community about the research program and its findings):
Summaries in lay language: At monthly meetings, CanCURE investigators present a few slides summarizing their work in lay terms. These meetings help scientists and community members track progress and results together. Sharing of all generated research product: We will provide annual summaries of CanCURE activities for the Last Gift team and for the CATIE magazine and website. We will also provide research summaries for collaborating organizations' websites or newsletters and submit abstracts for relevant conferences.
o “Pull” strategies (activities that help interested stakeholders - “pull” information about the research):
Community surveys to identify topics of relevance about CanCURE: We will conduct surveys among community members to determine which CanCURE topics the community would like to prioritize and to understand participation challenges. Discussed topics will include willingness to join research studies, preferred visit frequency and appropriate compensation.
Preliminary results of a survey conducted for CanCURE 3.0 indicate that the priorities for future cure research ranked by the participants (n=20) are:
1) not having a higher risk for health issues (e.g. heart or liver disease) compared to people who do not live with HIV and
2) studying various HIV locations in tissues using tissue donated by PWH for research.
The main KM activities participants would like to see are:
1) Webinars about HIV cure research beyond the CanCURE group (92%) and
2) Webinars about the work being done in CanCURE, in-person symposiums before the conferences and lay language summaries of CanCURE studies (77%).
o Linkage and exchange (activities that facilitate “linkage and exchange” among stakeholders):
Partnerships between scientists and the community: We will keep hosting our successful Cafés Scientifiques to unite scientists, clinicians, community members, and policymakers. The CAB organizes these events by selecting relevant topics with the team and working with CanCURE investigators to develop them.
Trainee scientist-community member buddy system: This initiative pairs trainees with community members at conferences, where they can select and attend three presentations together, discussing the findings. Trainees report improved communication skills, while community members gain a better understanding of the research. Trainees will also attend at least one community event for reciprocal learning.
Webinars on HIV cure research: Our webinars on CanCURE work have been successful, leading to significant publications with community members as authors.
CanCURE Advisory Board (CAB)
Shari Margolese
Leader - Community advocate
Since my diagnosis in 1993 I have experienced many lifesaving breakthroughs in HIV research, and for this I am grateful. However, to completely eliminate HIV related illness and stigma, the ultimate goal is a cure.
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Community based research cordinator at COCQ-SIDA
Tanguy Hedrich worked in academic research in biomedical engineering for almost 10 years. In 2022, he switched to community-based research to work even more closely with the community. His work as a research coordinator consists of creating links between academic researchers, actors from community-based organizations and community members.
The Coalition des organismes communautaires québécois de lutte contre le VIH/sida (COCQ-SIDA), regroups 36 community-based organizations involved in the fight against HIV/AIDS throughout Quebec.
Tanguy Hedrich, PhD
Claudette Cardinal
Community Advocate
Claudette Cardinal - Wâpakwaniy is a wise woman from the Kehewin Cree Nation in Alberta. In her 30th year of living with HIV, and works thousands of hours on HIV, mental health, aging and Indigenous-focused research initiatives over the last two decades, a leader in HIV amongst Indigenous women in Canada.
As an Indigenous Community Researcher and Community Member of the Feast Centre for Indigenous STBBI Research, also a member of the International Community of Women Living with HIV–North America. She collaborates with a wide range of organizations, including: the BC Centre for Excellence in HIV/AIDS, the Centre for Gender and Sexual Health Equity, THRIVE, COAST, and the Canadian HIV Observational Cohort (CANOC), SHARE/CARE among others.
Wangari Tharao
Director of Research and Programs at Women’s Health in Women’s Hands
Tharao is the Director of Research and Programs at Women’s Health in Women’s Hands, a community health centre that provides primary healthcare services for African, Caribbean, Latin American and South Asian women in Toronto and surrounding areas. She is also a community based researcher, researching HIV issues relevant to women living in Canada who have migrated from countries with generalized HIV epidemics. Wangari has co-founded several local, provincial, national and international networks including, the African and Caribbean Council on HIV/AIDS in Ontario (ACCHO), the Canadian HIV/AIDS Black, African and Caribbean Network (CHABAC) and the African and Black Diaspora Global Network on HIV and AIDS (ABDGN) to support Black populations living in Canada and other developed countries
New tool to understand HIV research
In an effort to disseminate knowledge from latest HIV research, Darien Taylor and Craig McClure prepared a summary of the HIV cure research symposium held during the 2017 IAS conference. The document, entitled The road towards HIV Cure, is using plain language and is intended to provide knowledge to the community, as well as offeroffimportant notions to investigators new to the field.
Special thanks to Darien and Craig for producing this outstanding and useful document, and to Robert Reinhard, Delphine Planas, Ian Grubb and John McCullagh who reviewed the article.
Lay Summaries of research
The Canadian Institutes of Health Research (CIHR) -and other grant distributing agencies- fund research involving human participants. In their guidelines, they incorporate directives to distribute research results so that benefits of knowledge creation spread across all interested parties. Reaching out to the public and communities affected by HIV is one of the most critical dissemination efforts.
Within CanCURE, we hope the posting of clear summaries of results from the team’s studies will increase trust in the research enterprise, promote collaboration and advocacy and encourage healthy discussion of issues to advance HIV Cure research. We will use this space on our website to post summaries when research involving human participants who volunteered either by providing biological samples and/or testing an intervention in a clinical trial led to a publication of those discoveries.
Renee Mashing, PhD Candidate
Community Advocate
Working with the CanCURE team is an opportunity to share Indigenous values regarding research and to learn more about basic science. The “science buddy” is one of my favourite aspects of the Community Advisory Board/research team and students collaboration.
Engaging The Public - Research Towards an HIV Cure
With the support of a Planning and Dissemination grant from the Canadian Institutes of Health Research (CIHR), the Canadian Foundation for AIDS Research (CANFAR) and the Fonds de recherche du Québec - Santé (FRQS), Community Advisors and Scientific Investigators of CanCURE have produced a brief educational video to engage people with HIV and the broader public in CanCURE's research towards Cure(s) for HIV. We hope this overview of the field and of the work of CanCURE's Investigators and Community Advisors will be distributed widely. The video is bilingual (English/French) and can be used to inform the public about a critical component in the effort to end the HIV/AIDS epidemic, to advocate for further research and to encourage participation and support in this team effort.
ACCHO facts sheet
The African and Caribbean Council on HIV/AIDS in Ontario (ACCHO)has collaborated with CanCURE to develop an HIV Cure fact sheet. It is designed to assist African, Caribbean and Black (ACB) communities, service providers who work with them and other stakeholders in demystifying HIV Cure and increasing knowledge and awareness of the complexities of the search for a Cure.
Project Inform
The Project Inform, an American initiative, is a source of information, inspiration and advocacy for people living with HIV and/or HCV. The Delanay AIDS Research Enterprise (DARE) and others have put together a very useful glossary, with terms connected to HIV biology and research, as well as explanatory diagrams, and a resources section compiling different useful web-pages available on this website.
CIHR PAn-Canadian Network for HIV/AIDS & STBBI Clinical Trials Research Program
(CTN)
The CIHR Pan-Canadian Network for HIV & STBBI Clinical Trials Research (CTN) has put in place, with the our community liaison, a website to offer information about different clinical trials, treatment guidelines, and a directory of different Cure HIV research groups.
CUREiculum
The mission of the Global Advocacy for HIV prevention (AVAC) is to achieve an end to AIDS. The website provides an extensive resource section, from publications to meetings reports and an R&D database. They also developed a tool called CUREiculum which is designed to provide information on HIV cure research and increase literacy about ongoing research. The CUREiculum is separated in different modules, each developed in collaboration with a community educator, HIV advocacy groups, the Martin Delaney International Community Advisory Board, and a scientific partner.
IAS - International AIDS Society and The Canadian Consortium for HIV Cure Research (CanCURE) and its host institution, CRCHUM we were pleased to participate in the organization of the pre-conference Trajectories Towards a Cure for HIV: Research and Priorities, which will feature scientists from around the world, as well as patients, partners and stakeholders in the field, on July 28 2022. Watch the videos below!
CanCURE presents:
a community friendly video
CanCURE students are proud to present to you the research projects carried out within our research consortium which includes virologists, immunologists, clinicians and representatives of the communities of people living with HIV.
The ultimate goal of our research is to develop a cure for HIV infection. To achieve this, CanCURE members conduct a translational and interdisciplinary research program that is aimed at
1) identifying and characterizing HIV reservoirs
2) understanding how different types of cells of the immune system contribute directly and indirectly to HIV persistence and
3) testing eradication strategies in animal models and in pilot clinical studies. Enjoy !