Reporting names would be a deterrent to HIV testing, Californian study shows

A significant majority of individuals having an HIV test in California support a non-name code mode of HIV surveillance, according to a study published in the June 1^st edition of The Journal of Acquired Immune Deficiency Syndromes. The investigators, for the University of California, San Francisco, also found that the adoption of name-based HIV surveillance would mean that a significant number of individuals would be deterred from HIV testing.

Because of the decline in AIDS diagnoses and deaths since the introduction of HAART, the US Centers for Disease Control (CDC) recommended that all states adopt a method of HIV surveillance based upon new diagnoses. In July 2002 California adopted a system of surveillance based upon a non-name code. Several US states, however opted for named reporting of HIV infections arguing that it assists in the provision of services.

Opponents of name reporting maintain that any benefits are outweighed by the potential deterrent effect. They also point out that named reporting is not necessary for medical referrals.

Investigators wished to evaluate the acceptability of California’s non-name code method of surveillance amongst a diverse population of individuals having an HIV test at a public clinic.

Data were gathered using a questionnaire. Individuals were asked to provide demographic information, their sexual activity, history of injecting drug use and prior HIV testing history. Respondents were also asked if they had had a confidential HIV test (the results of which are notified to state health authorities), or an anonymous test. Individuals were also asked to say which method of HIV test reporting they preferred: non-name code, name reporting, or name to code. Finally, respondents were also asked to say how likely they were to take a repeat HIV test in the next year.

A total of 208 individuals at 14 HIV testing centres participated in the study. Overall, 67% preferred code reporting of HIV test results that did not involve a patient’s name. Only 12% favoured named reporting. Being a woman, sex between men and having had an anonymous HIV test predicted preference for coded HIV surveillance.

Significantly more individuals who said they were likely to have a repeat HIV test in the next twelve months said they would do so if a coded method of surveillance was used as opposed to name-based reporting (p

The investigators repeated their analysis a year after California introduced its system of coded surveillance. A total of 226 individuals completed questionnaires. Overall, 54% said that they found non-name code most acceptable, 19% reported that name-to-code was their favoured method of surveillance and 17% favoured monitoring using names.

Predictors of favouring code-based surveillance were sex between men, anonymous HIV testing and non-Hispanic ethnicity.

“The findings from this study document strong support among HIV testers in California for a non-name coded reporting system”, write the investigators. They note that extra effort is needed to develop coded HIV surveillance and suggest that their study demonstrates “this added effort is worth it in terms of acceptability to those who seek publicly supported testing.”