Vincent LOOTEN and Marie SIMON Digital Personalized Health and Medicine L.B. Pape-Haugaard et al. (Eds.) © 2020 European Federation for Medical Informatics (EFMI) and IOS Press. This article is published online with Open Access by IOS Press and distributed under the terms of the Creative Commons Attribution Non-Commercial License 4.0 (CC BY-NC 4.0). doi:10.3233/SHTI200339
https://pubmed.ncbi.nlm.nih.gov/32570558/
Abstract. In 2017, French institutions reformed their data access policy regarding the national insurance and administrative databases systems (French abbreviation: SNDS), including claims data from hospitalization discharge summaries for the entire population follow-up encompassing over 10 years. Our study aimed to quantitatively and qualitatively describe such authorization before and after the reform. We extracted data access demands for French National Health Data Institute (INDS) data before and after the reforms. We included only studies that needed data extracted from the SNDS database and authorization of the regulator. We inferred the number of projects accepted pre- and post-reform, and we describe the types of studies, their topics, and the types of data used. We included 802 data access demands between January 1st 2008 and September 21st 2019. The median of data access demands by year increased from 21.5 to 203. This increase was lower in the studies included insurance data (21.5 to 70). The evolution is driven by the activity of Private companies and contract-research organization. The number of studies on Hematology and oncology and internal medicine increased respectively by 1.7 and 1.4 factors. Data access of claims data refers to the “accessible” dimension of the FAIR guiding principles. However, extrinsic factors influence the accessibility of claims data such as human factors (e.g. data scientist with experience in claims data) and economic factors (e.g. data infrastructure HIPAA and GDPR compliant).
Keywords. Data Sharing, Policy, Administrative Claims