Time for revolution? Enhancing meaningful involvement of people living with HIV and affected communities in HIV cure-focused science
Jillian SY Lau, Miranda Z Smith, Brent Allan, Karine Dube, A Toni Young, Jennifer Power
Journal of virus eradication | MEDISCRIPT LTD | Published : 2020
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..View full abstract
The INSPIRE project was funded by a small grant from the Melbourne HIV Cure Consortium. We are grateful to all people who participated in the INSPIRE workshop which informed the findings presented in this paper. In particular, we are grateful to people living with HIV who shared their insight and lived experience to inform this work. Roslyn Le Gautier assisted in the development of this project.