White Paper e-Health Data Sharing – Best practices and solutions for data sharing, anonymization and data lake creation with health data
The expansion of digital health and data-driven technologies in the biomedical field has the potential to ensure better disease prevention, personalized therapies, and more accurate patient diagnoses. Indeed, the Covid-19 pandemic has promoted a global trend of digital transition in healthcare.
However, the regulatory framework within the European Union and technical barriers may hinder the adoption of efficient technology solutions at the expense of patient care. Out of this need comes the white paper “E-health Data Sharing,” a project that aims to define a regulatory and technical framework that represents the new level of parity in the healthcare sector.
Data Valley organized a heterogeneous working table to explore, in dialogue between experts, hospitals, pharmaceutical companies, associations and other industry players, the topic of leveraging data for research and for the development of new solutions and forms of interaction.
The white paper produced by the working table describes the state of the art and the legal and technical perspectives in the collection, access, preservation, use and reuse of health data, focusing in particular on: the sharing of personal and non-personal data, anonymization and new techniques used to protect patient information, such as synthetic data, the enhancement of data through sharing, and the creation of new data-driven products and services in the world of health care.
The publication of the white paper “E-health Data Sharing” marks the conclusion of the first phase of a journey and the starting point for building discussion with different stakeholders, involving institutions, academia and the private sector. In particular, as Data Valley we will continue to collect and integrate new contributions to enrich the first version of the white paper and create complementary tools to this document, such as checklists and toolkits, in order to highlight the most relevant elements.
The White Paper of Data Valley “E-health Data Sharing” arises from the need, shared by operators in the sector, to reconstruct the applicable legal framework and define best practices for sharing data and creating data spaces in the healthcare sector.
The first section describes the impact of data analysis in the healthcare sector, the European perspectives for creating dataspaces, and the emergence of the need to identify, define and consolidate models and best practices for anonymization and sharing.
The second section, dedicated to the use of health data for treatment and research purposes, reconstructs the applicable legal framework, differentiating between personal data, anonymous data, and pseudonym data according to the GDPR; analyzing the specificities relating to the processing of health data for treatment and research purposes, also distinguishing between experimental research and observational research; deepening the problems relating to the sharing of “group data”.
The third section focuses on the evolutionary profiles to enhance health data among the actors in the ecosystem by creating data lakes in health care to improve research/care through the concentration of data.
Finally, the fourth section describes the technologies for anonymization and synthetic data, the choice of technology, and its implementation.
Click here for the full version of the White Paper: