Policy

Sharing and re-use of health data 

Facilitating the reuse and sharing of electronic health data for research is an important cornerstone for improving current research processes as well as healthcare and patient health outcomes. However, a range of ethical, legal, and technical considerations such as data privacy, sensitive data or interoperability have hindered the development and application of approaches for such reuse and data sharing. EU-AMRI members are involved in several European-wide initiatives supporting the deployment of infrastructure capacities to optimise the future sharing and re-use of health data while safeguarding privacy of data subjects.  

Patients, co-creators of health research 

Meaningful patient engagement is key success factor of health research. EU-AMRI members share a joint vision that patients should be involved alongside researchers as co-creators and partners and contribute to a much-needed cultural shift in the way academia, regulators, industry, and HTA bodies collaborate together with patient organisations. EU-AMRI members are also supportive of training patients and carers in understanding the research and development process in order to increase their future engagement.  

Utilisation and consolidation of European Research Infrastructures 

The European landscape of Research Infrastructures for life science research has substantially extended in the last 5-10 years and will continue to do so. Through initiatives such as EU-AMRI, BBMRI, EATRIS and ECRIN are joining forces to help consolidate their existing resources and offer joint services with the common objective to avoid duplication and drive further utilisation of their infrastructures by a wider research community in Europe and beyond.  

Quality and reproducibility of health research  

Recent reports in both the general and scientific media show there is increasing concern within the biomedical research community about the lack of reproducibility of key research findings. The current situation results from a combination of the inherent complexity of scientific research, of technological and methodological innovation, of a lack of accountability for researchers, and of incentives created by a publish-or-perish culture in academia. EU-AMRI is strongly committed to enable high quality and reproducible research by ensuring that research quality is safeguarded through providing access to research facilities of excellent, establishing quality standards and disseminating (and adopting) of best practices by its members as well as the broader biomedical community.