Time for revolution? Enhancing meaningful involvement of people living with HIV and affected communities in HIV cure-focused science

Abstract

Introduction: Involving affected communities and people living with HIV (PLHIV) in HIV cure-focused clinical trials has ethical and practical benefits. However, there can be barriers to meaningful involvement of 'lay people' in scientific research meaning community consultation is often limited or tokenistic. This paper reports on an Australian project, the INSPIRE project (Improve, Nurture and Strengthen education, collaboration, and communication between PLHIV and Researchers), which aimed to explore barriers and enablers to enactment of the principles of meaningful involvement of PLHIV (MIPA) and affected communities in HIV cure-focused research. Methods: The project involved a workshop a..