To function properly, the EHDS will need sustainable organisational and resource arrangements at EU and national, and in some cases regional, levels. Funding is one of the most important of these arrangements. TEHDAS has called for a sustainability plan to address these questions as a prerequisite for the successful launch and running of the EHDS.

The report concludes that both EU and national and local funds will be needed to build a European data access and sharing system.

Data cannot be shared in the EU without effective systems for data collection and access in member states. While the European coordination needs to be funded from the EU budget, member states will incur expenses as governments will have to develop their national capacity to join the European data exchange and benefit from using data.

The report highlights many complex questions in reaching the economic sustainability of the EHDS. For example, often-used project-based EU funding is not predictable and needs substantial resources from the member states.

The infrastructures that will be developed as part of the EHDS need to be constantly maintained and co-ordinated. This requires permanent resource allocations and funding similar to the data sharing initiatives managed and maintained by EU agencies.

The report is based on an analysis of the funding of six existing EU health data sharing mechanisms. It gives an overview of the EU’s funding instruments relevant to the secondary use of health data and looks at the country experiences.

TEHDAS will continue to study the economic sustainability of the secondary use of health data and a final report will be issued in early 2023.

For more information and to download the report: https://tehdas.eu/results/tehdas-identifies-funding-options-for-secondary-use-of-health-data/

The technical services are structured for each phase of an updated version of the user journey. There are four steps a data user, such as researcher, will need to follow to be able to access data and use it. These are data discovery, data permit application, data use and project finalisation.

The report describes the functions of each service, the actors involved in providing the service, and whether it would be implemented in centralised, distributed or a hybrid manner in the forthcoming European health data space (EHDS).

The report clarifies the main elements – known as the architecture of the health data space – in relation to existing regulations, such as the General Data Protection Regulation (GDPR), and with the aim of preparing it for the expected EHDS regulation proposal.

The report provides a basis for discussion on how these services could be implemented. TEHDAS will continue its work and issue a final report in early 2023.

For more information and to download the report: https://tehdas.eu/results/tehdas-suggests-minimum-technical-services-for-the-european-health-data-space/

This workshop seeks to engage stakeholders early in the drafting process of an EU Network data quality framework, to ensure a robust starting point, in line with their expectations and needs.

The main objectives of the workshop are to:

• Engage stakeholders in a discussion on the content (e.g.: topics, table of contents) and approach to a Data Quality Framework, according to their needs
• Collect input from experts in the field and learn from existing experiences
• Prioritise use cases to focus an in-depth analysis

The meeting will be broadcast live, and a video recording will be made available afterwards. No registration is required to view the live broadcast.

Watch the broadcast here: https://www.ema.europa.eu/en/events/data-quality-framework-medicines-regulation

The webinar will take place on March 29th from 14.00 – 15.30 CET.

The webinar aims to showcase how participation in IMI funded projects benefits SMEs in terms of growing their businesses and also in further developing expertise in collaboration with other project participants. By bringing their own innovative ideas, products, services, and expertise, they are helping IMI projects achieve outstanding, long-lasting results. In IHI projects, SMEs will continue to act as a key interface between the latest academic discoveries and implementation in industry.

Registration is mandatory for the webinar.

More information and registration here: https://www.ihi.europa.eu/news-events/events/imi-impact-smes-health-data-management-health-it-sectors-event

The agenda features the following sessions:

• Session 1 – How the European regulatory framework reacted to the COVID-19 emergency: Extraordinary and challenging measures
• Session 2 – Connecting and sharing health data: The repurposing approach
• Session 3 – The power of data sharing to enhance evidence for innovative treatments

The first session will focus on the extraordinary regulatory measures put in place by the international and national authorities to face the emergency, the lessons learnt from the pandemic and their impact on future actions that might improve the healthcare system in Europe. An insight on the value of the use and sharing of health data will be provided in the second and third sessions.

More information and registration here: https://www.benzifoundation.org/events/the-health-emergency-regulatory-crash-and-future-perspectives/

The RFI has been built after extensive consultation with patient groups, clinicians, researchers, and biotech industry actors. To streamline the submission process and encourage broad participation, CZI has provided six RFI questions—only one response is required for submission, but submitters may choose to respond to any number of the six questions.

Responses are encouraged from patient communities, researchers, clinicians, health technology developers, and a diverse range of experts to share knowledge and submit information that can help address similar challenges from different perspectives. 

Submissions are due by November 30th.

Learnings from the RFI are intended to be shared with the community and stakeholders.

For more information and to complete the RFI: https://chanzuckerberg.com/rfa/rare-as-one-request-for-information-patient-registry-data-interoperability-2/

This course, along with other current and planned courses, are available upon registration (free) through the EHDEN Academy.

More information and registration here: https://academy.ehden.eu/

The webinar will take place on September 29, 2021 from 16.00 – 17.30 CET.

During the webinar, experts from ERNs will discuss the need to build a long-term vision and a holistic data strategy for ERNs, which is connected with the wider policy agenda and aligned with the proposed European Health Data Space and the work of the European Joint Programme on Rare Diseases (EJP RD). Dr. Daria Julkowska, the Coordinator of the EJP RD, will be an expert member of the panel discussion along with other EJP RD partners.

More information and registration here: https://rwe4decisions.com/event/delivering-a-health-data-strategy-for-the-european-reference-networks/