HIV-positive vs HIV-infected: reducing barriers to clinical research through use of appropriate and accurate language
Background: Inappropriate language, now modified in the lay press, includes the terms 'victim' and 'sufferer' for people living with HIV/AIDS. We wanted to see whether similar examples are considered important in medical reporting. If so, this could inform closer collaborations between researchers and the community.
Methods: A single-question online survey asked whether there was a preference for either 'HIV-positive' or 'HIV-infected' in clinical research. Participants were asked to discount cases when HIV-positive would be inaccurate (prior to seroconversion and in children < 2 years). Comments were encouraged to understand qualitative reasons for any preference. The UK-Community Advisory Board (CAB), European CAB and American Treatment Activist Coalition (ATAC) lists each received an email. Advocates were selected, as they would understand medical language from a community perspective. Each group included both HIV-positive and HIV-negative individuals.
Results: Response rates within 1 week were good: 7% (20/305), 45% (55/95) and 15% (38/180) in the UK, European and US groups. This was greater than list participation on other topics indicating the issue was relevant. 'HIV-positive' was preferred by a significant majority in each network: 95% v 5% (UK-CAB), 79% vs 21% (EATG) and 87% vs 13% (ATAC). Comments from 40% participants (n=47/110) covered 3 categories: i) a strong preference for HIV-positive, for humanistic reasons (n=35); ii) limited use of HIV-negative in some medical reporting (n=5); and iii) preferring neither term (n=7). Examples are included in the poster.
Conclusions: This short survey signaled that both that terminology is relevant and that 'HIV-infected' can be problematic. It supports further surveys in non-advocates and perhaps doctors. The results will be used to start a dialogue with researchers over language at medical meetings and in publications. This emphasises the human focus of medical research. Unless scientifically inaccurate, it is appropriate to use terms chosen by the people affected.
S. Collins1, X. Franquet2, T. Swan3
1HIV i-Base, London, United Kingdom, 2Grupo de Trabajo sobre Tratamientos del VIH (gTt), Barcelona, Spain, 3Treatment Action Group, New York, United States