Health-RI

Infrastructure and User Services 

Our increasing understanding of underlying mechanisms of health and disease has led to the recognition that most diseases turn out to be multifold in nature. Consequently, no single institution on its own still has access to meaningful numbers of patients and citizens in these subcategories, and data sharing has become a prerequisite for any meaningful research in this field.

Health-related research requires the use of high-quality multidimensional and longitudinal data on individuals, which can be biospecimens, clinical data, data from large population cohorts, medical imaging data, multi-omics data, plus data collected through devices such as smart phones. The great promise of novel whole genome sequencing and Artificial Intelligence technologies are currently not being materialized in the health domain due to the lack of high-quality health outcome data needed to apply or correlate these techniques to.

We have organised the broadest network of stakeholders possible in this field to realise the Dutch national data infrastructure for data-driven health and life sciences, in support of research, innovation and policy development. Coordinated by the Health-RI foundation, we are designing and constructing the national federated data infrastructure, covering ethical and legal requirements and technical standards, making data from healthcare and the research domain available for broader use.

With all stakeholders, the Health-RI infrastructure is well positioned to connect the Netherlands to the European Health Data Space and European Research Infrastructures. Health-RI provides the critical basis for the successful application of very powerful AI technology, in developing personalised health and a learning health system.

Examples/description of the type of research

The Health-RI infrastructure provides a common national point of entry to acquire access to health and life sciences data for all scientists in academia and industry in the life sciences, health and medicine domain, including pharma. The infrastructure is designed to remove all obstacles that currently exist in accessing and combining data across organisations, to boost research, innovation and policy development. Health-RI thus offers a one stop shop for researchers to broadening our understanding and developing knowledge to develop personalised health strategies and a learning health care system.

The Health-RI infrastructure operates as a data commons to support all forms of data-driven health research, including all fundamental, preclinical, clinical and broader translational health research using human data and samples. The infrastructure is a prerequisite infrastructure arranging for the data availability and data interoperability to develop evidence-based and trusted AI-applications for innovation in health and medicine.

How to access the infrastructure?    

Access to the Health-RI infrastructure is compliant to all regulations related to the use of personal data, including the GDPR. Data holders are offered support, and an API to connect their local (FAIR) datasets to a central metadata catalogue as part of the national Health Data portal. Data users are offered a national user portal and discovery tools to find and select relevant datasets, and a professional Data Access Application Management System (DAAMS), including ethical review. In line with the EHDS requirements, access to services includes a secure processing environment to safely analyse data in a privacy-preserving manner.