Value of a national administrative database to guide public decisions: From the système national d'information interrégimes de l'Assurance Maladie (SNIIRAM) to the système national des données de santé (SNDS) in France.

In 1999, French legislators asked health insurance funds to develop a système national d'information interrégimes de l'Assurance Maladie (SNIIRAM) [national health insurance information system] in order to more precisely determine and evaluate health care utilization and health care expenditure of beneficiaries. These data, based on almost 66 million inhabitants in 2015, have already been the subject of numerous international publications on various topics: prevalence and incidence of diseases, patient care pathways, health status and health care utilization of specific populations, real-life use of drugs, assessment of adverse effects of drugs or other health care procedures, monitoring of national health insurance expenditure, etc. SNIIRAM comprises individual information on the sociodemographic and medical characteristics of beneficiaries and all hospital care and office medicine reimbursements, coded according to various systems. Access to data is controlled by permissions dependent on the type of data requested or used, their temporality and the researcher's status. In general, data can be analyzed by accredited agencies over a period covering the last three years plus the current year, and specific requests can be submitted to extract data over longer periods. A 1/97th random sample of SNIIRAM, the échantillon généraliste des bénéficiaires (EGB), representative of the national population of health insurance beneficiaries, was composed in 2005 to allow 20-year follow-up with facilitated access for medical research. The EGB is an open cohort, which includes new beneficiaries and newborn infants. SNIIRAM has continued to grow and extend to become, in 2016, the cornerstone of the future système national des données de santé (SNDS) [national health data system], which will gradually integrate new information (causes of death, social and medical data and complementary health insurance). In parallel, the modalities of data access and protection systems have also evolved. This article describes the SNIIRAM data warehouse and its transformation into SNDS, the data collected, the tools developed in order to facilitate data analysis, the limitations encountered, and changing access permissions.

French national health insurance information system and the permanent beneficiaries sample.

In France, in the early 2000s, legislators ordered that the National Health Insurance regime develop an inter-regime information system (SNIIR-AM) aimed at better understanding and evaluating beneficiaries' health care consumption and associated expenditures. In 2009, it contained data from the general health insurance regime that covers 86% of the French population; approximately 53 million people. Data are only available for a period of two years plus the current year. In addition, a permanent sample of health insurance beneficiaries (EGB) was created from the SNIIR-AM database. This is a permanent, representative cross-sectional sample of the population covered by National Health Insurance which, since 2004, monitors beneficiaries' health care consumption over a period of 20 years. It contains anonymous sociodemographic and medical characteristics and records of health care reimbursements. It was created using a systematic sampling method (1/97) on the two-digit control key of beneficiaries' national identification number and includes both current year reimbursement recipients and non-recipients. In 2009, it grouped together almost 500,000 beneficiaries covered by the National Health Insurance Fund for Salaried Workers; 77% of the population residing in France excluding public service employees and students. The EGB is used to conduct longitudinal studies as it permits tracing back patients' care paths and use of care in both hospital and office-based care environments and to calculate individual expenditures. It also permits the study of certain relatively frequent diseases characterised by a 100% reimbursement rate for certain chronic diseases and the reimbursement of tracer drugs. Eventually, the SNIIR-AM will include beneficiaries covered by all the different Health Insurance regimes in France.