Towards Improved Trial Recruitment Through Patient/Citizen-Driven Data Donation of Electronic Health Records in...

The secondary use of healthcare data can play a crucial role in enhancing health care systems, patient care, and clinical research; however, it is challenged by privacy, governance and regulatory challenges. The aim of the Smart FOX project is to address these challenges to facilitate citizen-driven donation of ELGA (Austria Electronic Health Records) - standardized. The project consortium comprises stakeholders across several healthcare-related areas developing concepts and architectures for patient/citizen driven data-donation. This paper specifically introduces two distinct services for recruiting patients and citizens to enable secondary data use within the project. Service A, a researcher-focused service integrated in the hospital information system, within the Smart FOX project focuses on two primary use cases: enabling the study of new trial cohorts for data consumers (e.g., CROs), and contacting data donors (e.g., citizens) for trial recruitment. Service B, a web-based patient/citizen focused service, addresses three key use cases: identifying recruitment potential, facilitating contact with the recruitment pool, and presenting data donation opportunities via digital advertising and on its internet platform. By leveraging innovative digital platforms and federated data approaches, the Smart FOX project aims to overcome barriers in secondary data use, ultimately driving more efficient, inclusive, and secure clinical research that benefits both healthcare systems and patients/citizens.