Guidelines for Data Reusability for personalised medicine researchers and other stakeholders
Personalised medicine marks a paradigm shift from a “one-size-fits-all” approach to a tailored strategy for disease prevention, diagnosis, and treatment. It leverages an individual’s unique biological characteristics (e.g., phenotype, endotype, genotype) alongside lifestyle and environmental factors to optimise healthcare outcomes. With rapid advancements in the field, the scope of technologies, methodologies, and data sources has expanded significantly, enabling more precise diagnostics, targeted treatments, and personalised strategies for prevention, rehabilitation, and overall healthcare improvement.
Publication
In alignment with the core values of the European Union (EU), research data generated under the EP PerMed programme is expected to remain accessible and reusable, even beyond the project’s funding period. However, ensuring long-term accessibility and reusability presents significant challenges.
The EP PerMed Guidelines for Data Reusability aim to guide personalised medicine researchers and other stakeholders by outlining key principles of data reusability and its associated challenges.
Specifically, it explores the following aspects:
- Data life cycle overview and introduction to the FAIR principles (Findability, Accessibility, Interoperability and Reusability). Integrating FAIR principles is imperative for improving data reusability and ensuring sustainable data management.
- Data management and stewardship plans, essential to ensure high quality digital publications that facilitate research data discoverability and reusability.
- Ethical and legal considerations and challenges in term of data interoperability and harmonisation when generating or reusing healthcare data.
- Challenges of data reusability in personalised medicine and initiatives to address these challenges.