Background

Aging can be accompanied by a decline in cognitive and functional abilities, sometimes leading to the onset of Alzheimer’s disease or a related condition, or to frailty or dependency. One of the objectives of the 3 Cités (3C) study was to better study and understand these conditions. However, beyond observing these conditions in a research study like 3C, it is very important to be able to track them across the entire population. As part of its mission to monitor the health status of the population, Santé publique France is developing a new method to track changes in the cognitive and functional health of aging individuals using data collected by the national health insurance system. This data includes patients’ healthcare utilization and constitutes a very rich source of information. However, it does not contain all the results of patients’ clinical examinations.

Objectives

The objective of this project is to validate algorithms—by combining health insurance data with data from the 3C study—that allow for monitoring changes in the health status of the entire French population using health insurance data.

Methods

Through secure and pseudonymized data transmission, the Health Insurance system will enrich the 3C data by adding information on participants’ healthcare utilization history. Using this healthcare utilization data combined with the precise disease diagnoses in the 3C study, Santé publique France, in collaboration with the 3C investigators, will thus be able to develop algorithms to identify participants with dementia or Alzheimer’s disease, dependency, or frailty. These algorithms, developed and validated in the 3C study, can then be applied nationwide to the entire set of health insurance data. Please note that the entire data transmission process is conducted in a fully pseudonymized manner, and neither Santé publique France nor the National Health Insurance system has access to the direct identification of 3C participants. This project received CNIL authorization on June 30, 2019, No. DR-2019-184. This pseudonymized data is stored within a secure portal of the National Health Insurance Fund. Only authorized staff at Santé publique France will have access to this data.

Outlook

This new data will be extremely useful for predicting and improving care needs for the aging population in France. It will help identify individuals who could benefit from specific care and track diseases over time.

Individual Rights

Santé publique France is responsible for processing personal data, based on the fulfillment of a public interest mission, carried out for the purpose of this supplementary study.

Participants in the 3C study may exercise their rights to object, access, rectify, delete, or restrict their data by contacting:

• Dr. Catherine Helmer (INSERM U1219, ISPED, 146 rue Léo Saignat, 33076 Bordeaux).

• Dr. Claudine Berr (INSERM U 1061, La Colombière Hospital, P.O. Box 34493, 34493 Montpellier Cedex)

Once statistical analyses have begun, these rights can no longer be exercised.
For any further questions regarding the protection of your data, you may contact the Data Protection Officer at Santé publique France (dpo@santepubliquefrance.fr) or Santé publique France, DPO-Data Protection Officer, 12 rue du Val d’Osne, 94415 Saint-Maurice Cedex.

Complaints regarding the processing of your data may be filed with the French Data Protection Authority (CNIL). However, we recommend that you first contact the Data Protection Officer at Santé publique France, who is available to assist you in this matter.