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.
Our Community Advisory Board (CAB) is an essential and active part of our team, insuring an open dialogue between researchers and the community.
“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.
“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.
Integrated knowledge mobilization approach
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:
Not having a higher risk for health issues (e.g. heart or liver disease) compared to people who do not live with HIV
Studying various HIV locations in tissues using tissue donated by PWH for research.
The main knowledge mobilization activities participants would like to see are:
Webinars about HIV cure research beyond the CanCURE group (92%) and
Webinars about the work being done in CanCURE, in-person symposiums before the conferences and lay language summaries of CanCURE studies (77%).
Linkage and exchange
Webinars on HIV cure research
We believe in the importance to make knowledge accessible for all. Our webinars on CanCURE work have been successful, leading to significant publications with community members as authors.
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. The investigators also participate in community events to present their findings in an accessible way.
CanCURE trainees presents:
a community friendly video
CanCURE 🤝 defeatHIV
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.
Stories
The last-gift: Jim's courage,
our hope
This documentary highlights Jim's contribution to HIV cure research through the donation of his body to science. It was produced by the Last-Gift team, at the University of California in San diego. Through the Canadian End-of-Life study, CanCURE partners with people like Jim to achieve a better caracterization of the HIV reservoir in deep tissues.
The good death of Richard Darch
Richard Darch was an artist and hairdresser, a pioneer and a survivor, who endured long enough to see medical assistance in dying become legal in Canada. At the moment of his death, he donated his organs to medical science so that CanCURE researchers could study the long-term effects of HIV and the drugs used to treat it.