Community Engagement
With partnership and engagement as some of the policy directions guiding the federal action under the Federal Initiative to Address HIV/AIDS in Canada, CanCURE is committed to CIHR principles of Citizen Engagement in conducting its research program.
Citizens are "engaged" when they play an active role in defining issues, considering solutions, and identifying resources or priorities for action. This "meaningful involvement" can take place at a variety of stages in the research, planning, or implementation phases of a project.
In the case of HIV Cure research, this means putting mechanisms into effect that ensure the greater involvement and meaningful engagement of people living with HIV/AIDS (GIPA/MIPA); GIPA/MIPA is a principle that puts people living with HIV/AIDS at the centre, while being grounded in human rights as well as the dignity of the full human being.
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 program.
In addition, CanCURE conducts ongoing public outreach, as well as knowledge translation and exchange with all stakeholders. On July 1, 2014,CIHR awarded a Planning and Dissemination grant jointly to CanCURE, and to the EPIC4 (Early Pediatric Initiation - Canadian Child Cure Cohort) Study Group, to initiate public discussion on the aims and actions under our collaborative research.
Resources
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.
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.
CTN cure study page
This resource provides a summary of HIV cure research that is supported by the CTN. It is not a complete roster of Canadian HIV cure research since much of the effort is in basic science or preclinical stages (research that is needed before clinical trials can take place) or is not supported by the CTN. The CTN works closely with Canadian researchers and is eager to help them move their intervention strategies into clinical testing.
CanCURE Advisory Board
Managing Expectations of an HIV Cure: What Should We Expect?
Robert Jay Reinhard, community liaison for CanCURE, published an article in the Journal entitled AIDS Research and Human Retroviruses. It is available at the link below.
Keresa Arnold
Research Coordinator
African and Caribbean Council on HIV/AIDS in Ontario (ACCHO)
Keresa Arnold is the Research Coordinator at the African and Caribbean Council on HIV/AIDS in Ontario (ACCHO), where she coordinates the development, implementation and monitoring of ACCHO’s research initiatives. ACCHO provides leadership in the response to HIV/AIDS in African, Caribbean and Black communities in Ontario. It is a provincial coalition of organizations and individuals committed to HIV prevention, education, advocacy, research, treatment, care and support for African, Caribbean and Black communities.
Charlotte Guerlotté
Community-based research coordinator, Coalition des organismes communautaires québécois de lutte contre le VIH/sida (COCQ-SIDA)
Charlotte Guerlotté is the community-based research coordinator at the Coalition des organismes communautaires québécois de lutte contre le VIH/sida (COCQ-SIDA), bringing together 36 community-based organizations involved in the fight against HIV / AIDS throughout the province of Quebec. The coordinator's job is to bring together actors from different community-based organizations, community members and university researchers in order to jointly develop research projects that meet the needs of the community and aimed at social transformation. Community-based research is research by and for communities and with researchers. Working together is essential to fight HIV, but most importantly to support and improve the lives of people living with HIV (PLWHIV).
Graduated of Anthropology at the University de Montréal, Charlotte is passionate about identity and cultural diversity, social sciences in general, and she is excited to open her horizons to the basic sciences. The collaboration between CANCURE and COCQ-SIDA is an excellent opportunity to build bridges between communities and researchers to improve the daily lives of PLWHIV and move towards a functional cure for HIV.
Shari Margolese
Community Research Consultant
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.
Renee Mashing
CanCURE 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.
José Sousa
Community Advocate
Jose Sousa has been living with HIV since 1985 and started doing HIV advocacy/activism in 1989. He has served on the board of several ASO's as well as community and scientific committees such as the CIHR/CTN, HIV Expert Advisory Committee of Health Canada, Ontario HIV Network, Lipo-Action, and the COCQ-SIDA Provincial Treatment Committee. While he believes that much work still needs to be done especially in some countries, he also believes that we should be looking for a cure that would be accessible to all countries including sub-saharan Africa.
Darien Taylor
Community Health Advocate
Darien Taylor has been living with HIV for approximately 30 years, and has been active in the HIV community throughout this time. Now retired, she was most recently the Director of Program Delivery at CATIE for eight years. She continues to be active in the Toronto-based activist organization AIDS ACTION NOW!, advocating for HIV treatment access and related issues. Her current focus is on research leading to a cure for HIV.
Quote: "One must go into oneself armed to the teeth." -Paul Valéry
Ron Rosenes
B.A (hon) M.A., LL.D (hon), CM
Ron Rosenes has been living with HIV for over 30 years and became an active volunteer member of the HIV community in Toronto in 1991. Ron has served in governance roles as the Board Chair of ACT, founding Board Member of the Sherbourne Health Centre and as a member of the Steering Committee of the Canada AIDS Russia Project and Vice Chair of AIDS2006 Toronto Local Host. In 2011 he stepped down as Vice Chair of Canadian Treatment Action Council after 14 years. Ron serves on numerous advisory committees including a CIHR Working Group on Ethics in Patient Engagement in Research. In addition to CanCURE, Ron’s research interests include HIV, aging and related co-morbidities. Ron has received numerous awards for his community work, including an Honorary Doctorate from Carleton University and the Order of Canada.
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
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 Canadian HIV Trials Network
The CIHR Canadian HIV trial network (CTN) has put in place, with the participation of Robert Reinhard, 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.