25 years of the meaningful involvement of people living with HIV: Community action in research

Description:

In the early 1990s the prognosis for people living with HIV was very poor. Treatment strategies were in early development and HIV stigma was high. HIV advocates believed that it was essential for people living with HIV to be treated as partners in scientific research efforts to improve the quality and quantity of HIV research in Canada. In 1992, community advocates called for the development of a community committee to review scientific protocols and informed consent forms as part of the CIHR Canadian HIV Trials Network (CTN). In 1993 the Community Advisory Committee (CAC), of the CTN was born, forever changing the dynamics between pharmaceutical companies, researchers, and people living with HIV in Canada.

Over the past 25 years, CAC has evolved with the landscape of the movement and created capacity building tools including the Primer, Community Engagement handbook, and a Model Informed Consent. Postdoctoral fellows now attend CAC face-to-face meetings as part of their training, providing iterative learning opportunities. Meaningful involvement of people living with HIV is now integrated into priority setting and development of research questions and research priorities at the CTN.

Objectives:

Created and led by people living with HIV and other community members, this session aims to:

• Provide an outline of the history of the development of the CAC and how members contribute within the research communities.
• Share tangible examples of how meaningful engagement of community through out the research project can have a positive impact for all involved to the successful completion of the project.
• Participants will learn concrete examples of best practices when engaging people living with HIV in the research process.

Format:

A panel presentation will include current and /or former CAC members, postdoctoral fellows who have participated within the CAC as well as some CTN investigators looking at some of the successes and challenges faced over the years. A reception with light refreshments will follow the presentation.