About the EHDA e.V.
What is the European Health Data Alliance e.V. and why does it exist?
Bringing health data from theory into practice - for the benefit of citizens
The European Health Data Alliance e.V. (EHDA) is a non-profit association founded with the aim of promoting the development of citizen-centred health data spaces in Europe. The Alliance sees itself as a trailblazer so that companies and interested (research) institutions can successfully develop pioneering health-related projects with regard to the European Health Data Space (EHDS). The founding members are taking up the efforts and results from the nationally BMWK-funded projects HEALTH-X, TEAM-X and the GAIA-X- Med project funded by the state of Schleswig-Holstein and, in the next step, will invite European partners to further develop the technical and organisational solutions developed in the three projects as secure processing environments (sVU) in cross-border and cross-sector use cases.
The core tasks are the further development of the available technical and organisational solutions for data-based healthcare services and the expansion of the technological basis as a blueprint for the
development of EHDS-compliant data rooms. These serve as secure processing environments in trustworthy care and research scenarios. In addition, the further development and exchange of expertise, the development and coordination of solution options for technical and organisational challenges, as well as their transfer to member companies, politicians and the public, is an elementary field of activity in order to position awareness and diversity of data usage scenarios in society
The tasks of the EHDA e.V. are
Further development and promotion of health data room technologies:
Support and further development of EHDS-compliant Gaia-X technologies and secure processing environments (sVU), including the permanent establishment of structures and results from projects such as "HEALTH-X dataLOFT", "GAIA-X-MED" and "TEAM-X".
Integration and utilisation of data infrastructures:
Establishment, coordination and further development of centralised and decentralised data infrastructures for the use of primary and secondary data in research, healthcare, prevention and rehabilitation
Promotion of co-operation and knowledge exchange:
Establishing national and international co-operations, strategic alliances and promoting the exchange between members, science, industry and politics through events and public relations work.
For me, involvement in EHDA e.V. means the chance to actively help shape digital healthcare solutions and drive forward networked, patient-centred healthcare in Europe. It is an opportunity to combine technological innovation with social responsibility and to ensure that healthcare data is used securely and for the benefit of all.
Prof. Dr. Björn Eskofier
Head, Chair of Machine Learning and Data Analytics at FAU and Chief Financial Officer and Deputy Chairman of EHDA e.V.
Mitglieder & Partner
Our DNA: the Golden Rules of the EHDA e.V
We act according to the values of EHDS, Gaia-X and IDSA
The concepts and values of Gaia-X, European Health Data Space and the International Data Spaces are the guiding principles for the implementation of the EHDA Data Space and the execution of (decentralised) data exchange transactions in the EHDA Data Space.
Data protection: privacy as standard
Effective and reliable data protection is of paramount importance not only as a goal, but also to ensure citizens' trust in the data space. This means that data should be protected and kept private by default, above and beyond the legal requirements.
Focus on citizen centricity
The EHDA data room is based entirely on the consent of citizens.
All transactions involving an individual's data may only commence if the data subject has given active and valid consent to the transaction in question. The EHDA Data Space relies fully on the consent of citizens in the context of the forthcoming EHDS Regulation for the transfer of data from one data holder to another via the EHDA Data Space
Data sovereignty
The EHDA data space is designed as a sustainable solution for the digitisation of health data to enable new health research, better health services and more efficient digital healthcare. It aims to combine primary and secondary health data markets.
All participants should be able to participate on equal terms and have sovereignty over their data. They ensure that the services they offer or use remain open and fair and are free from discrimination and undesirable lock-in effects.
Governance framework
EHDA e.V. defines and establishes the governance framework required to enable (decentralised) data exchange transactions in the EHDA Data Space ("Governance Framework"). The EHDA e.V. may define technical standards ("Standards"), non-technical requirements ("Non-Technical Requirements") and other guidelines for participants and the products and services they make available in the EHDA Data Space.
The EHDA e.V. can use certifications and other legal instruments to give effect to the Governance Framework.
Freedom of contract for citizens
Citizens enjoy freedom of contract within the EHDA data space in accordance with the governance framework and applicable laws and regulations. Data-holding participants respect citizens' choices and wishes as long as they are in line with applicable laws and regulations.
Registration and certification
Each participant undertakes to comply with the Governance Framework by registering in the EHDA data room. Participants require certification for certain products and services, which is issued by a conformity assessment body authorised for the EHDA data room.
Personal responsibility and compliance with the law in the EHDA data room
Each Participant is obliged to comply with all applicable laws and regulations in its actions within the EHDA Data Space on its own responsibility, in particular competition law, data protection laws
(GDPR and others), legislation under the EU Digital Strategy (including in particular the EHDS, the Digital Market Act, the Digital Services Act, the Data Governance Act, the Data Act and the AI Regulation) and all applicable cybersecurity legislation ("Compliance by Conduct").
Technical requirements to ensure compliance
As part of the governance framework, EHDA e.V. can define specific requirements for the design of technologies and processes to ensure compliance with applicable laws and regulations. Even if EHDA e.V. specifies such requirements, each participant is still responsible for its own compliance behaviour.
Safety standards
Each Participant shall manage its access to and use of the EHDA Data Room responsibly at all times and in accordance with all applicable technical security standards set out in the Governance Framework.
Participants bear a responsibility towards other participants arising from non-compliance with these safety standards.
Ensuring compliance with the Golden Rules
EHDA e.V. reserves the right to monitor Participants' compliance with these 12 Golden Rules (including delegating such monitoring to third parties). EHDA e.V. reserves the right to enforce the Governance Framework (including through third party participants), including by withdrawing certifications and/or registration as a participant or other measures that are reasonably necessary.
Legal provisions and disclaimer
These 12 golden rules apply as part of the governance framework until they are amended or replaced by EHDA e.V.. They are binding for every participant on the basis of the corresponding registration process. They only establish a contractual relationship with EHDA e.V. or form part of such a relationship if this has been expressly agreed between EHDA e.V. and the participant.
The EHDA e.V. is not responsible for the data exchange transactions concluded between the participants. Each participant acts at his/her own risk and responsibility in accordance with the conditions agreed with other participants.