The purpose of the study was to map and describe the healthcare utilization databases (HUDs) available in Italy's 19 regions and two autonomous provinces and develop a tool to navigate through them. A census of the HUDs covering the population of a single region/province and recording local-level data was conducted between January 2014 and October 2016. The characteristics of each HUD regarding the start year, data type and completeness, data management system (DMS), data protection procedures, and data quality control adopted were collected through interviews with the database managers using a standard questionnaire or directly from the website of the regional body managing them. Overall, 352 HUDs met the study criteria. The DMSs, anonymization procedures of personal identification data, and frequency of data quality control were fairly homogeneous within regions, whereas the number of HUDs, data availability, type of identification code, and anonymization procedures were considerably heterogeneous across regions. The study provides an updated inventory of the available regional HUDs in Italy and highlights the need for greater homogeneity across regions to improve comparability of health data from secondary sources. It could represent a reference model for other countries to provide information on the available HUDs and their features, enhancing epidemiological studies across countries.
Availability of Real-World Data in Italy: A Tool to Navigate Regional Healthcare Utilization Databases
SKRAMI, EDLIRA;Carle, Flavia;Villani, Simona;Borrelli, Paola;Zambon, Antonella;GESUITA, ROSARIA
2019-01-01
Abstract
The purpose of the study was to map and describe the healthcare utilization databases (HUDs) available in Italy's 19 regions and two autonomous provinces and develop a tool to navigate through them. A census of the HUDs covering the population of a single region/province and recording local-level data was conducted between January 2014 and October 2016. The characteristics of each HUD regarding the start year, data type and completeness, data management system (DMS), data protection procedures, and data quality control adopted were collected through interviews with the database managers using a standard questionnaire or directly from the website of the regional body managing them. Overall, 352 HUDs met the study criteria. The DMSs, anonymization procedures of personal identification data, and frequency of data quality control were fairly homogeneous within regions, whereas the number of HUDs, data availability, type of identification code, and anonymization procedures were considerably heterogeneous across regions. The study provides an updated inventory of the available regional HUDs in Italy and highlights the need for greater homogeneity across regions to improve comparability of health data from secondary sources. It could represent a reference model for other countries to provide information on the available HUDs and their features, enhancing epidemiological studies across countries.I documenti in IRIS sono protetti da copyright e tutti i diritti sono riservati, salvo diversa indicazione.
