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Connecting principles for Consortia
Health-RI has developed “Connection Principles” to help new parties connect to the Dutch national health data infrastructure. These principles provide guidance on how consortia and initiatives can align with the Health-RI infrastructure, in coordination with regional Health-RI nodes. This initiative was taken in response to the recent NWO-call for Research Infrastructures National Consortia. Health-RI is working together with health research funders and health foundations to establish funding conditions that stimulate consortia to connect their aspired health and life sciences data resources to the national health data infrastructure. In this way, funded research and infrastructure projects will, in turn, contribute to the build-up of the collective national infrastructure and to a learning health system in the Netherlands.
Health-RI works with several ministries and national stakeholders to establish the national health data infrastructure for research, innovation and policy. As a collective infrastructure enabling data- and AI-driven health and life sciences, Health-RI aims to connect all substantial national, regional and local infrastructure initiatives in the Netherlands that fit the scope of the national health data infrastructure. Health-RI also ensures to align the national health data infrastructure with European frameworks such as the European Health Data Space, European research infrastructures and the European Open Science Cloud.
In realising the Health-RI infrastructure with support from the National Growth Fund, Health-RI actively works with many stakeholders in the health sector, the science field, and initiatives in the health/medtech and digital innovation sectors. For example, dedicated regional node teams have been set up at all seven University Medical Centres plus TU-Eindhoven that work with regional parties in the fields of health, science and innovation to connect data resources and other infrastructure elements. In addition, Health-RI closely collaborates with national funding agencies to actively promote the development, realisation and use of the infrastructure, supported through a shared Roadmap to enable secondary use of health data. In parallel, Health-RI strives to engage research communities to establish domain-specific Health-RI nodes.
Health-RI underlines the importance of establishing strong Research Infrastructure consortia, that fit the scope of the national health data infrastructure. In alignment with the regional node teams, Health-RI provides the following connection principles for relevant consortia
Health-RI connection principles:
- Consortia clearly commit to connect their infrastructure to the national health data infrastructure and to contribute their knowledge and experience to help further develop/improve the national health data infrastructure. The regional Health-RI node teams, in alignment with the Health-RI hub team, can advise how to organise this best.
- Consortia align their infrastructure components to the common Health-RI architecture.
- Consortia commit to adopt nationally recommended and internationally accepted (meta-)data standards and/or common data models (see pointers to much-used standards on the Health-RI website).
- Consortia commit to making their data resources findable via the Health-RI data catalogue, according to the (meta)data onboarding procedure published on the Health-RI website. This help to be prepared for future requirements of the EHDS.
- Consortia explicitly work to make their resources (e.g. data, biomaterials) available as part of their project, with clear access conditions that fit the Health-RI general guidelines for access, following the principles of Open Science and EHDS requirements.
Infrastructure consortia are advised to indicate how their infrastructure fits the scope of existing European Research Infrastructures.
The term connecting must be interpreted at multiple levels, e.g. technical interoperability, metadata exposure, access conditions, largely specified in the overall list of connection principles.