Perspectives on Research and Personalized Healthcare in the Context of Federated FAIR Data Based on an Exploratory Study by Medical Researchers

Background: Research in personalized medicine, with applications in oncology, dermatology, cardiology, urology, and general healthcare, requires facile and safe access to accurate data. Due to its particularly sensitive character, obtaining health-related data, storing it in repositories, and federating it are challenging, especially in the context of open science and FAIR data. Methods: An online survey was conducted among medical researchers to gain insights into their knowledge and experience regarding the following topics: health data repositories and data federation, as well as their opinions regarding data sharing and their willingness to participate in sharing data. Results: The survey was completed by 189 respondents, the majority of whom were attending physicians and PhD candidates. Most of them acknowledged the complex, beneficial implications of data federation in the medical field but had concerns about data protection, with 75% declaring that they would agree to share data. A general lack of awareness (80%) about the importance of interoperability for federated data repositories was observed. Conclusions: Implementing federated data repositories in the health field requires thorough understanding, knowledge, and collaboration, enabling translational medicine to reach its full potential. Understanding the needs of all involved parties can shape the success of medical data federation initiatives, with this study serving as a foundation for further research.