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Building blocks of a health data infrastructure: together with and for data users and data holders
What are the building blocks needed to build an integrated health data research infrastructure, accessible for researchers, citizens, and care providers? What solutions already exist in healthcare and in research, and which building blocks need priority? More than 100 participants gathered in the afternoon session during the Health-RI conference and contributed ideas in an interactive workshop.
Together with stakeholders, Health-RI is building a national portal for the reuse of health data, also known as secondary use of health data. During the parallel session Building Blocks for an integrated Health & Research Data Infrastructure: moving towards a learning healthcare system, the building blocks of this integrated health data infrastructure were schematically explained by Niels Bonding, Technical Lead at Health-RI.
This national health data structure is being built step by step, in a pragmatic way, using existing architecture principles and infrastructures that have already proven themselves, expanded with new components proven in use cases.
The basis of the infrastructure is a network with a central hub and regional nodes. These regional nodes are formed by the university medical centers (UMC’s) where data exchange is already taking place. Representatives of the university medical centers were present and collected input from the audience during the parallel session.
The building blocks for Health-RI’s health data infrastructure can be divided into four categories, explains Niels Bonding: 1. making data reusable for multiple purposes, 2. exchanging data, 3. using data, and finally 4. generic services to support data users and data holders, such as authentication and authorization tools and pseudonymization methods.
The Health-RI health data infrastructure is made up of both building blocks under development and building blocks that have already demonstrated their added value in practice. Jet Zoon and Patrick Kemmeren opened this afternoon session by explaining the architecture and building blocks of the shared data registry at the Princess Máxima Center for pediatric oncology.
A single shared data registry accelerates the exchange of information and knowledge between research and clinic. That was the starting point for the Princess Máxima Center when designing the data-architecture of the hospital, which opened its door officially in 2018, according to Patrick Kemmeren (Group Leader & Head Big Data Core). Clinical data from electronic health records, as well as biobank data with DNA and tissue, combined with diagnostics and databases for clinical trials, are all linked together in this architecture.
The shared data registry was built on seven key features, says Jet Zoon (Data Steward Research). A minimal data model lays at the basis of the shared data registry, with plug and play solutions and FAIR data and tooling. The Princess Máxima Center for Pediatric Oncology uses unique institute-wide identifiers to pseudonymize patients. The central subject registry uses data validation and error handling protocols and was built as a user-friendly self-service facility, making ‘shopping lists’ for data access requests possible and easy.
Sharing input and feedback
In this interactive session, multiple stakeholders gave their input and feedback on the suggested building blocks for an integrated health research infrastructure in the Netherlands. With assistance from the delegates from the university medical centers, potential missing pieces of the integrated health research infrastructure puzzle were identified by the researchers, data storage specialists, PhD students, information managers, architects, patient representatives and many others present.
At Health-RI, we work together with a growing group of stakeholders. We would love to hear from you, exchange ideas and give you an active role. Are you committed to making health data accessible and available? Are you representing a health care organization or health software solution organization? Please join us and get in touch with us via Niels Bolding (Niels.Bolding@Health-RI.nl). We would love to give you an active role, exchange ideas and align agendas.