Community voices in HIV research

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26 Jul 2018


On Tuesday, I attended a session of brief oral presentations on a range of projects about community involvement in research. Among the presenters, Dr Graham Brown from the Australian Research Centre for Sex, Health and Society (ARCSHS) presented on the People living with HIV Quality of Life Scale or PoZQoL.

Graham describes the project as “a survey about making a survey”. The purpose of the project was to come up with a short list of validated questions that was able to measure quality of life among PLHIV. Over 400 PLHIV participated in the survey and collectively specifically acknowledged and thanked in the presentation for our continued participation in research (in fact, all presenters acknowledged PLHIV ).

Another key feature of this project, was the involvement of community organisations as coinvestigators in the project. Indeed, NAPWHA, Positive Life NSW, Living Positive Victoria and Queensland Positive People have all been heavily involved in this research throughout the project lifecycle. It represents a model for the meaningful involvement of PLHIV in research about us.

The result of the project is that a quality of life scale has been developed. Thirteen questions across four domains will be used by Australian positive voice organisations to both measure and monitor quality of life of PLHIV participants across a range of our programs and services. It will help inform programs, health promotion and education, advocacy and representation efforts, while also focusing on factors that lead to improved quality of life for all PLHIV , which in turn will improve health outcomes for us all.