The implementation of compulsory notification of HIV in France has been the subject of debate for many years, mainly due to concern for the human rights of patients with HIV, with only AIDS cases being notified. An anonymous reporting system for HIV infection was scheduled to begin in 1999, but this was delayed due to opposition from organisations demanding measures to strengthen patient anonymity and data protection. The new system is the product of extensive collaboration between the Institut de Veille Sanitaire (InVS), patient associations, civil rights groups, health care professionals (microbiologists, clinicians, epidemiologists), the ministry of health, and expert committees (on safety, ethics), all of whom are represented on a steering committee. The new arrangements, which reinforce patient anonymity and data protection, meets the requirements of the parties involved, and has been authorised by the National Commission for data processing and liberty (CNIL), the national authority for the protection of personal data collected on individuals.

The system rests on three main principles:

• Cases are notified by the microbiologist and the clinician (in the case of children under 13 years, the paediatrician is the only person to notify) (figure). The microbiologist, who performs the diagnostic test for HIV infection, "initiates" the notification, and sends the notification form to the doctor who completes it;
• Double anonymisation: (i) creation of an initial anonymous code by the microbiologist, using software provided by InVS, (ii) automatic transformation of this code to a second code upon entry into the InVS database;
• Patients are given information on the compulsory nature of the notification by their doctor.

Only newly diagnosed cases have to be notified. The data to be collected on the notification forms include age, sex, nationality, country of residence, country of birth, occupation, reason for attending screening, previous HIV serology, route of transmission, and clinical stage.

Facilities for eliminating duplicate reports and for following the progression of disease (HIV, AIDS, and death) in an individual, were requirements of the new system. The anonymising software generates a unique sixteen-letter code from the initials of the first name and surname, sex, and date of birth. The second coding stage, at the InVS database level, produces a second, unique code, made up of over 100 characters.

In addition to the compulsory notification system, InVS and the laboratory of the National Reference Centre (CNR) coordinate virological surveillance of HIV. This applies to individuals over the age of 13 who, according to information from their doctor, are not opposed to participating in the surveillance system. The aim of the study is to evaluate whether or not the HIV infection is recent (less than six months old), using a detuned assay, and to identify whether the case is infected with group B virus or not, by serotyping. The notifying microbiologist takes a sample on blotting paper from the bottom of the tube that was used for the diagnostic test, and sends this to the National Reference Centre. The sample is analysed and the results sent to InVS, where it is linked to the epidemiological information provided by the compulsory notification form. This process enables those recently infected to be described, and provides an estimate of HIV incidence.

Figure: Notification of HIV infection (adults and adolescents 13 yrs and over)