This open access book provides an in-depth overview of the characteristics, significance, backgrounds and limits of the most relevant electronic health data categories used at a global level for secondary purposes. These include healthcare system improvement, patient safety and quality of care, health policymaking, surveillance of diseases, personalized medicine, research and innovation such as artificial intelligence training for clinical practice.
A detailed and thorough representation of published evidence, practical experiences and concrete examples is offered to the reader who has the opportunity to explore the main areas of utilization of electronic health records, biobanking data, genetic and ‘omic’ data, real-world data and many other health data from different sources.
The challenges and advantages of health data reuse are explained from a public health perspective that addresses risks, benefits and impacts for different stakeholders such as health data holders (e.g., healthcare providers, pharmaceutical and medical device companies), health authorities and data permit issuers (e.g., health data access bodies), and health data users (e.g., healthcare professionals, researchers, business partners in the healthcare system such as insurers, commercial providers of digital solutions).
Given the increasing expansion of health data used for secondary purposes, Secondary Use of Electronic Health Data: Public Health Perspectives, Use Cases and Challenges serves as a go-to resource to facilitate the implementation of health data reuse ecosystems. In this regard, it also highlights emerging opportunities such as the European Health Data Space which is extensively explained.
Fidelia Cascini, MD, PhD, born in Rome (Italy) on 13th July 1975 and mother of two sons, is a medical doctor specialized in Legal Medicine and Hygiene. She holds a Doctor of Philosophy in Forensic Medicine, a Master of Science in Hospital Risk Management, and is currently professor at the Department of Life Sciences and Public Health at Università Cattolica del Sacro Cuore in Rome.
In cooperation with the Italian Ministry of Health, where she has been in charge since 2021 as digital health adviser, Fidelia has been involved in several European Union initiatives in the framework of the European Health Data Space (EHDS) such as the joint action Xt-EHR (Extended EHR@EU Data Space for Primary Use) and the coordination and support action MyHealth@MyHands (Supporting patients' access to their health data in the context of healthcare services for citizens across the EU) in the field of primary use; the joint actions TEHDAS and TEHDAS2 (Towards the European Health Data Space), and the support actions QUANTUM (Quality, Utility and Maturity Measured) and SHAIPED (Supporting Health Data Access Bodies to establish Artificial Intelligence pathways enabling Deployment of AI as medical device tools), in the field of secondary use of health data.
From June 2022 to March 2024, she has been designated by the Ministry for Foreign Affairs and International Cooperation as the expert, national delegate at the Working Party on Public Health of the EU Council, for the negotiations on the European Health Data Space regulation entering into force in 2025.
In July 2023, she was elected Co-Chair of the Clinical and Consumer Engagement Work Stream at the Global Digital Health Partnership (GDHP) with the main mission of improving the digital health literacy and use of digital health technologies across countries.
In June 2024, she was elected Chair of Stakeholders' Fora within the Health Data Access Bodies (HDAB) Community of Practice for the secondary use of health data in the scope of the European Health Data Space. In February 2025, she has been elected Chair of the Steering Board of the same HDAB Community of Practice.
Since 2024, she is a member of the Advisory Board of the Tendering HADEA/2023/OP/0024 "Capacity Building for Secondary Uses of Health Data for the European Health Data Space."
From 2020 to 2021, she was a member of the G7 Working Group on Standards and Interoperability and the G7 Artificial Intelligence Working Group.
Since 2019, she also has served as Italian Representative of the European Observatory on Health Systems and Policies (WHO).
At a national level, she is currently a member of the National Coordination Centre of Territorial Ethics Committees for clinical trials on medicinal products for human use and medical devices, established at the Italian Medicines Agency (AIFA). She is also the expert of the Coordination Unit of the working group for the creation of the New Portal for Transparency of Health Services at the National Agency of Regional Health Services (Agenas).
From 2020 until the end of 2021, she was a member of the Data Coordination Unit Task Force, established in March 2020 by the Prime Minister's office for the COVID-19 emergency. She acted as digital health expert of the Ministry of Health in the working group on investments for Telemedicine managed by the National Agency of Regional Health Services (Agenas).
In 2021 she was engaged by the World Health Organization (WHO) for "Drawing up a country snapshot on the role of public health agencies and services in responding to the COVID-19 pandemic in Italy". She is also a member of the Strategic Partners' Initiative for Data and Digital Health (SPI-DDH) launched in 2024 by the WHO European Region.
She is currently author of four monographs and of more than 70 scientific research papers, of which 57 are indexed on Scopus (almost always appearing as first author) and published in Q1-level journals for research in the field of public health and digital technologies.
