Consumer representation in multi-site HIV, mental health, and substance abuse research: the HIV/AIDS treatment adherence, health outcomes and cost study

Abstract

Funders of HIV, mental health, and substance abuse research and services are increasingly mandating substantial consumer representation in the programmes they support. A review of the literature reveals that despite considerable challenges, consumer representation in HIV, mental health, and substance abuse research and services can be extremely valuable, both for the consumer representatives and the programmes they serve. The consumer representation model of the HIV/AIDS Treatment Adherence, Health Outcomes and Cost Study is described. Consumer representatives and principal investigators are interviewed about their experiences working within the model. Their collective comments form the basis of recommendations for practice when employing consumer representation models.