What are health insurance data?
Every time the national health insurance fund reimburses anyone for medical care (consultation, medication, physical therapy, hospitalization, etc.), information about the care is recorded. Under very specific condition, researchers can have access to this information.
Why do we want to use these data?
As one of the objectives of the Epipage 2 study is to gain a better understanding of the outcome of preterm children, we do and will continue to ask you regularly, at different stages of the follow-up, for information about your children's outpatient care, hospitalization, and medication as they grow up. This information is tedious to complete in a questionnaire and it can be difficult to remember all of it when you are asked about an entire year or even several years later.
To obtain accurate information about your child's health and medical care, without having to bother you too often, we would like to collect this information about medications, hospitalization, and other care received by your child from the health insurance records.
Similarly, we would like to be able to be able to complete the data collected at the maternity ward at the moment of delivery, by information about your own hospitalizations, care, and treatments during this pregnancy (and only then) that were reimbursed by your health insurance fund.
How can you get these data?
The Epipage-2 study has been authorized by the CNIL (national data protection authority) and by the State Council (Conseil d'Etat) to ask the health insurance fund for this information, but only if you agree.
Subject to your agreement, these health insurance data will be transferred to the Epipage-2 research team in full adherence to the rules of confidentiality. Only information useful to the study objectives will be collected. In accordance with the data protection law dated January 6, 1978, all steps are being and will continue to be taken to guarantee the safety of these data and especially to prevent non-authorized persons from having access to them. These data will be identified by an anonymity number, without mention of first or last names or dates of birth, just like all other data used for these analyses. No transmission or publication of data enabling the identification of children or families will be possible.
What are your rights?
You also have a right of access to see data about your child, either directly or through the intermediary of a doctor.