Tuppin P, Rudant J, Constantinou P, Gastaldi-Ménager C, Rachas A, de Roquefeuil L, Maura G, Caillol H, Tajahmady A, Coste J, Gissot C, Weill A, Fagot-Campagna A
Direction de la stratégie, des études et des statistiques (DSES), Caisse nationale d'Assurance Maladie des travailleurs salariés, 26-50, avenue du Professeur-André-Lemierre, 75986 Paris cedex 20, France.
Direction de la stratégie, des études et des statistiques (DSES), Caisse nationale d'Assurance Maladie des travailleurs salariés, 26-50, avenue du Professeur-André-Lemierre, 75986 Paris cedex 20, France.
Rev Epidemiol Sante Publique. 2017 Oct;65 Suppl 4:S149-S167. doi: 10.1016/j.respe.2017.05.004. Epub 2017 Jul 27.
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.
1999年，法国立法者要求医疗保险基金开发一个全国医疗保险跨制度信息系统（SNIIRAM），以便更精确地确定和评估受益人的医疗保健利用情况和医疗保健支出。这些数据基于2015年近6600万居民，已经成为众多国际出版物关于各种主题的主题：疾病的患病率和发病率、患者护理路径、特定人群的健康状况和医疗保健利用情况、药物的实际使用情况、药物或其他医疗保健程序的不良反应评估、国家医疗保险支出监测等。SNIIRAM包含受益人的社会人口统计学和医学特征的个人信息以及所有医院护理和门诊医疗报销信息，并根据各种系统进行编码。数据访问由权限控制，权限取决于所请求或使用的数据类型、其时效性以及研究人员的身份。一般来说，经认可的机构可以在涵盖过去三年加当年的时间段内分析数据，并且可以提交特定请求以提取更长时间段的数据。2005年组成了SNIIRAM的1/97随机样本，即受益人通用样本（EGB），它代表全国医疗保险受益人群体，以便进行20年的随访并便于医学研究获取数据。EGB是一个开放队列，包括新受益人和新生儿。SNIIRAM持续发展并扩展，在2016年成为未来国家健康数据系统（SNDS）的基石，该系统将逐步整合新信息（死亡原因、社会和医学数据以及补充医疗保险）。同时，数据访问和保护系统的方式也有所演变。本文描述了SNIIRAM数据仓库及其向SNDS的转变、所收集的数据、为便于数据分析而开发的工具、遇到的限制以及不断变化的访问权限。
