GÉANT Community Programme - eHealth survey for the NRENs - 2024 GÉANT Community Programme 2024 - SIG-DigitalHealthData (SIG-DHD) See also side notes at https://bit.ly/eH-survery-side-notes SIG-DHD home page on wiki: https://wiki.geant.org/display/EHE/eHealth+-+Home Section 1: Current level of support to the eHealth community and related trends Question Title * 1. Do you currently connect (provide NREN connectivity to) Health institutions (Hospitals, Research-Hospitals, Medical departments in the Universities, Nationally-relevant Health Institutes) ? Yes No Question Title * 2. Are you currently providing the Digital Health community with specific, tailored services - directly provided by you (e.g. Cloud Storage and/or Computing resources for sensitive data, or Cloud-based AAI services, Security-related services )? Yes No Question Title * 3. If you answered 'YES' to the previous question (n.2) , please specify what specific services you are providing to the Health Institutions and users community: Dedicated last mile connectivity services (e.g. redundant end-site connection link, ..) e2e circuits to interconnect multiple sites within the NREN network Security services Trust and Identity services Cloud IaaS Cloud PaaS Cloud SaaS Storage services (egCloud Storage, Sync&Share..) None of the above Other (please specify): Question Title * 4. Are you planning to do so in the next 1-3 years ? Yes No We'are not yet actively planning, but we're considering to do so Any other option/plan ? please specify: Question Title * 5. If you answered 'YES' to the previous question (n.4) , please specify what specific services will you provide your user community with next ? Dedicated last mile connectivity services (e.g. redundant end-site connection link, ..) e2e circuits to interconnect multiple sites within the NREN network Security services Trust and Identity services Cloud IaaS Cloud PaaS Cloud SaaS Storage services (egCloud Storage, Sync&Share..) None of the above Other (please specify): Question Title * 6. Do you have - within the NREN - a department, a team, a working group or any other form of structured support - specifically dedicated to the domain of Digital Health Data and/or eHealth? No, we do not have any staff specifically dealing with eHealth Yes, we have an (some) appointed person(s) Yes, we have a team devoted to eHealth Any other eHealth support approach: please specify Question Title * 7. If you answered 'No' to the previous question (n.6), please tell us why you do not have a team specific dealing with eHealth: Not in scope or of interest for the NREN misison and goals Lack of manpower to dedicate to this potentially interesting domain Do not have any interest in eHealth specifically Any other reason (please specify) Question Title * 8. Do you have an appointed staff member to join the SIG-Digital Health Data (SIG-DHD) activities (formerly called TF-eHealth) ? Yes No If not, why not ? Question Title * 9. Would you like to see your involvement in the domain of Digital Health growing in the next 2-4 years ? Yes No Question Title * 10. Is there any major, relevant EC-funded project, international collaboration, Research Infrastructure, national project or initiative your NREN is involved in (or plans to be involved in the next future) in the domain of eHealth, Digital Health Data and Life Sciences you think is worth mentioning here ? (please list, follow suggestions on survey notes for this question) 1) project, or international collaboration, Research Infrastructure, or national initiative 2) project, or international collaboration, Research Infrastructure, or national initiative 3) project, or international collaboration, Research Infrastructure, or national initiative 4) project, or international collaboration, Research Infrastructure, or national initiative 5) project, or international collaboration, Research Infrastructure, or national initiative 6) project, or international collaboration, Research Infrastructure, or national initiative 7) project, or international collaboration, Research Infrastructure, or national initiative 8) project, or international collaboration, Research Infrastructure, or national initiative Section 2: EU regulatory landscape, the EC, and the desired role of NRENs in the domain of Digital Health Data Question Title * 11. The EC is planning and designing the European Health Data Space (EHDS) as a health specific ecosystem comprised of rules, common standards and practices, infrastructures and a governance framework. This aims at Empowering individuals through increased digital access to and control of their electronic personal health data, and fostering a genuine single market for electronic health record systems (primary use of data)Providing a consistent, trustworthy and efficient set-up for the use of health data for research, innovation, policy-making and regulatory activities (secondary use of data)Do you think NRENs should be concerned by (or involved in) the design and establishment of the EHDS, because of the following reasons: The possibility that the EHDS will be designed based on standards on access policies, data transfer and management protocols, user authentication and authorization) that will turn out to be non compliant or not interoperable with the already existing standards in our R&E community The need to ensure that our Health users community will be prepared, proactively informed and aware of the implied changes (for researchers and site IT administrators) by EHDS getting endorsed and operational within the EU member states (e.g. required certifications, data access policy, data discovery and data curation, ..) Ensure a widespread and clear understanding of the implications of EHDS for the NRENs as providers of services to their user community ? I do not see any reason why NRENs should be dealing with or concerned by the establishment of the European Health Data Space Any other reason you see for EHDS to impact on the R&E ecosystem supported b y GÉANT and the NRENs ? Question Title * 12. What is the level of contact and coordination you have in place with the National Contact Point for eHealth (NCPeH) in the context of the eHealth Digital Service Infrastructure (eHDSI, myHealth@EU) and, more in general, with the National Health Initiatives in your country ? Very high coordination, high level of awareness of the governmental, national plans on eHealth (e.g. technical roadmaps, adopted solutions, implied dissemination towards users..) Basic coordination in place No specific coordination in place Any other more appropriate description of the level of awareness and coordination you’d want to use here: Section 3 - Should GÈANT and the NRENs collectively engage more ? Question Title * 13. Do you see as your task/role - as NREN - to aim at providing Cloud services (Computing, Storage) or other above-the-net services to manage sensitive data, and to provide Secure Processing Environments / Trust Research Environments for your Health user community (either directly or on behalf of the National Health Initiative/Health Data Access Bodies) ? Yes No Question Title * 14. Do you see as your task/role - as NREN - to aim at evangelising the Health User Community about the impact of EHDS, and its implications on the management of data, on data access policies, on provided services to the user community and the end-users side required changes (e.g. new/different ways of authenticating and being authorised to access resources/datasets..) Yes No Question Title * 15. Should GEANT and the NREN proactively act and lobby towards the key actors in the EHDS ecosystem, to ensure the services we’re currently providing to our communities will be able to interoperate with the solutions currently being designed for the EHDS2 (“HealthData@EU” - Health Data Space for the Secondary use of Health Data (e.g. Research) - liaising for example with the HealthData@EU pilot project: https://ehds2pilot.eu/ ) ? Yes No Question Title * 16. Would you welcome an action within the SIG-Digital Health Data aimed at introducing NRENs to each other in the domain of Digital Health, with the possible further outcome of jointly responding to Horizon Europe/Digital Europe/EU4Health/etc. calls for EU-funded project proposals ? Yes No Question Title * 17. EHDS is one of the 14 defined Common European Data Spaces (CEDS), which will be a part of the EU Strategy for data. Would you welcome any community task aimed at understanding how the CEDS will interoperate and how their integration with the EOSC will work (in particular, more specifically, how the EHDS will) ? Yes No I have no opinion Question Title * 18. What do you think NRENs could do together in the domain of eHealth ? Gather forces and skills to support their eHealth user communitis to submit project proposals on eHealth and Digital Health Data management ? Organise, with the support of GÈANT, webinars on key aspects related to supporting the eHealth user community, also in relation with the forthcoming new regulation (EHDS) ? Organise trainings on Security, and on the technologies to handle medical and sensitive data, on anonymization and pseudo-anonyzation techniques and tools, on securing the IT infrastructure to make it ready to handle sensitive data ? Set up a shared pan-European testbed availble to all GÈANT NRENs to directly experiment with the management of sensitive data fore eHealth ? Train the NRENs eHealth users community on the European Health Data Space ? I don't think NRENs should be doing anything together, collectively, in the domain of eHealth and Digital Health Data Other (please specify) Question Title * 19. More generally speaking, should the SIG further disseminate to the NRENs about the latest developments on the EHDS and its implications possibly impacting the NRENs at all levels (e.g. on Cloud, AAI, network, security services - and at the policy level) ? Yes No Other possible topics/levels impacted by EHDS (please specify) Question Title * 20. Should NRENs coordinate more with each other to jointly defined actions to be carried out collectively? Yes No Question Title * 21. Should the SIG further disseminate to the NRENs about the latest developments on the EHDS and its implications impacting the NRENs at all levels ? Yes No Question Title * 22. Any other recommendation/suggestion you have about how NRENs and GÉANT are currently relating to the domain of Digital Health/eHealth ? Question Title * 23. Your NREN: please tell us which NREN are you answering for Question Title * 24. Survey filer email address Done
