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We report here short notes on the individual calls with NRENs. The main points identified during the discussions are listed.
Date | NREN | Participating persons | Main outcomes | suggested actions | Additional notes |
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Oct 20, 2021 | GARR | Sabrina Tomassini Fulvio Galeazzi Federica Tanlongo Alberto Colla | - GARR overall interested in the TF activities
- Emphasis should be added on Storage : providing storage services
for the eHealth community is a key objective for GARR, and in this sense synergies and exchanges of best practices should be pursued within the TF activities. Storage means also the need for the eHealth community to archive their data in a safe manner and perform backups. - Mirroring of Relevant eHealth Data Sets is also an option NRENs
could consider to support the eHealth community - Informed consent and related tools targeting the possibility for users
to express it is one relevant item of interest TF could be involved in - To clearly separate and distinguish the various specific domains in
dealing with eHealth is fundamental: eIDAS and eduGAIN in this respect have different target communities and needs - IRODS (irods.org) is a key emerging technology to be considered in eHealth support
| - organise a thematic TF meeting
devoted to Storage Services for eHealth
| - very limited direct
manpower available to directly work on the current TF workplan
|
Nov 30, 2021 | SURF | Irene Nooren | - SURF currently engaging as key IT partner in the Dutch national eHealth initiative, https://health-ri.nl focusing
on health data sharing and implementing new data-based services for health. Goals of Health-RI are:
- Build an integrated health data research infrastructure accessible for researchers, citizens and care providers.
- Facilitate and foster the optimal use of knowledge, tools, facilities, health data and samples to enable a learning healthcare system and accelerate sustainable and affordable personalized medicine and health.
- SURF is helping with. procurement and governance too.
- Current main focus for SURF is more on the secondary use of health data: share of medical data to support research
- An archiitecture is being defined and possible approaches to data sharing being evaluated (centralized vs decentralized), the role to be played in the model by the individual health institution
- Data Sovereignty is a key feature of SURF strategy
- With respect to the required IT sevices for health, both acces to computing resources and storage are relevant. However there is an acknowledgement that emphasis should go above all on Storage. Storage needs, options, available services to support Health Research.
- Computing will become also increasingly. important in relation to AI
- For primary usage of Health data, interoperability is still the main issue to solve. Current focus necessarily on secondary usage of Health data for medical Research. At this level interoperability is (a bit) less of an issue.
- About what can be done of useful with other NRENs via the eHealth task force:
- Since other countries are also in the process of defining the IT architecturre of their national eHealth infrastructures, it would be good to share plans and ideas across NRENs - given the main constraints and requirements are similar
- Liaising with the EC Commission and provide information to all NRENs about new regulations, communications, strategic plans and funding opportunities for NRENs like nel calls frorm the main EU Programmes on eHealth. (EU4Health, HorizonEurope...etc) - Focus is on secondary usage of Health data for research, also in relation to key Life Science and Health Research Infrastructures, starting from EOSC-Life.
- Also getting to know/being able to contribute to the plans for eHealth. in GN5 would be interesting and useful.
- IRODS for federated storage is an interesting option, SURF would be interested to gather forces on this topic, share experiences, also, possibly, through the. organisation of a dedicated event.
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