Olivier Cohen

HC Forum®: a web site based on an international human cytogenetic database

Familial structural rearrangements of chromosomes represent a factor of malformation risk that could vary over a large range, making genetic counseling difficult. However, they also represent a powerful tool for increasing knowledge of the genome, particularly by studying breakpoints and viable imbalances of the genome. We have developed a collaborative database that now includes data on more than 4100 families, from which we have developed a web site called HC Forum (http://HCForum.imag.fr). It offers geneticists assistance in diagnosis and in genetic counseling by assessing the malformation risk with statistical models. For researchers, interactive interfaces exhibit the distribution of chromosomal breakpoints and of the genome regions observed at birth in trisomy or in monosomy. Dedicated tools including an interactive pedigree allow electronic submission of data, which will be anonymously shown in a forum for discussions. After validation, data are definitively registered in the database with the email of the sender, allowing direct location of biological material. Thus HC Forum constitutes a link between diagnosis laboratories and genome research centers, and after 1 year, more than 700 users from about 40 different countries already exist.

Unique patient concept: a key choice for European epidemiology.

The French Ministry of Health is setting up the personal medical record (PMR or DMP for Dossier Médical Personnel in French). This innovating tool is highly expected and will be extremely useful for the therapeutic follow-up as well as for epidemiological studies on which public health policies are based. Therefore the currently planned identifying process should prevent any epidemiological use of these data. Numerous scientific organisations have alerted government powers about the threat that this impairment represents, and they wish to promote some secure procedures that exist, which have already proved their efficiency at the national and international level.

Building application-related patient identifiers: what solution for a European country?

We propose a method utilizing a derived social security number with the same reliability as the social security number. We show the anonymity techniques classically based on unidirectional hash functions (such as the secure hash algorithm (SHA-2) function that can guarantee the security, quality, and reliability of information if these techniques are applied to the Social Security Number). Hashing produces a strictly anonymous code that is always the same for a given individual, and thus enables patient data to be linked. Different solutions are developed and proposed in this article. Hashing the social security number will make it possible to link the information in the personal medical file to other national health information sources with the aim of completing or validating the personal medical record or conducting epidemiological and clinical research. This data linkage would meet the anonymous data requirements of the European directive on data protection.

Interoperability Issues regarding Patient Identification in Europe

The paper describes the creation of a European patient identification system to facilitate an electronic medical record database within Europe.