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European Health Telematics Association

EHTEL

EHTEL: the European eHealth Stakeholder Platform EHTEL (the European Health Telematics Association) is a unique pan-European multidisciplinary stakeholder organisation, which brings together corporate, institutional, and individual actors dedicated to the improvement of healthcare delivery through digital health. EHTEL’s distinctive structure enables the exchange of ideas and information leading to innovation in the delivery of eHealth solutions and the transformation of health and social care. EHTEL facilitates interactions and sharing of knowledge among stakeholder groups. The association acts as a neutral forum, not as a lobbying group. EHTEL’s growing membership includes more than 40 organisations from all relevant stakeholder groups. The multitude of interests and viewpoints of its members enables EHTEL to take a holistic approach on the implementation of eHealth solutions. EHTEL provides a complete picture of the benefits and challenges of the deployment of I (...)

Lobbying Activity

Response to A European Health Data Space

1 Feb 2021

Feedback to Digital health data and services – the European health data space 1 February 2021 EHTEL welcomes the initiative of the European Commission to create the European Health Data Space (EHDS) organized around an operational and regulatory framework which would bind Member States and change the tempo in order to develop and implement the much-needed building blocks. While establishing a Member States driven process to create a generic European Health Data Space is an essential endeavour, we all know that this will not happen overnight. EHTEL believes that in parallel to this, it is important to work also bottom-up and support the creation and the development of ecosystems which are already today in a position to deliver high added value. The EHDS is indeed a virtual concept if it does not couple with actual "health data ecosystems". In an integrated health data ecosystem, actors interact and collaborate to find, archive, publish, consume, or reuse data as well as to foster innovation, create value, and support new businesses in the health domain.” Such an eco-system requires a high level of trust and integration based on shared common values. Those health data ecosystems already exist in numerous places in Europe and have been initiated by a wide diversity of actors (public, non-profit or private organisations). They are characterised by a high level of integration of the organisations involved (either legally, technically, or both) in the ecosystem and have all in common to have developed a coherent vision of the health data value chain they want to promote. Data represents already the strategic resources for the success of the ecosystem. The Commission may play a decisive role in providing the necessary visibility to those initiatives and to use them as demonstrators of what can be achieved, even if the scale and scope of the "space" is more limited. Providing a framework for those initiatives to work in a collaborative manner would also provide extremely valuable inputs to implement the concept at a higher level. Illustrating the development and functioning of EHDS through a set of use cases that cover the different secondary use purposes beyond health research, including policymaking, innovation and the development of AI algorithms, will benefit the design of processes and procedures that fit multiple purposes. Finally, a standing question remains on access criteria, especially in connection with the compensation to the value extracted from the EHDS. Linking value extraction to value generated for the EHDS or common good could be the way forward. This could adopt different shapes from devolving the outputs of the value extracted or committing to provide data in exchange of data. EHTEL has explored further the concept of health data ecosystem during a dedicated track in the December EHTEL symposium: https://www.ehtel.eu/activities/annual-ehtel-symposium/symposium-2020.html#S2
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Response to Legislative framework for the governance of common European data spaces

1 Feb 2021

OPEN DEI, representing a cluster of EU funded projects and large-scale pilots, welcomes the DGA and proposes the following recommendations co-authored by the projects. These are explained more fully in the accompanying PDF. We welcome the proposed role of the data intermediary, but recommend that the permitted roles in the content of eHealth are worked out in more detail, with a view to labelling/certification. The territorial scope of the DGA has to be further clarified and also the role and liability of EU-based representatives. The DGA specially applies to public sector bodies, which it defines. We recommend that the implications of extending the scope to non-public entities in health whose data is of great relevance and value e.g. private not for profit hospitals or third sector organisations providing social care or integrated care. We recommend greater clarity about the alignment of the national competent authorities undertaking DGA oversight and enforcement with the bodies performing that role for the GDPR. We welcome, as part of the implementation of data altruism, the introduction of data subject consent for areas of general interest including processing for scientific research purposes that cannot be precisely specified at the time of collecting the consent. However, greater clarity and guidance will be needed on how to remain compliant with the GDPR which requires consent to be specific. Clear and detailed guidance will be required for the public, data intermediaries, research users and regulators to ensure consistent pan-European interpretation and application, and to give confidence to all stakeholders. The DGA should make clear the grounds on which data may be used for scientific research without requiring consent, and in particular if specified pseudonymisation safeguards would be deemed sufficient to permit such data use.
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Response to European Electronic Health Record (EHR) Exchange Format

20 Dec 2018

(EHTEL) Towards an incremental approach to let citizens master the access to and the use of their health data via Interoperable EHRs EHTEL members welcome the recent initiative of the European Commission towards a 'Recommendation to establish a format for a European EHR Exchange'. Or response is guided by the three predefined aims of the reommendation, 1) [strategies] EHTEL encourages EU based coordination and support for national implementation, testing and certification, dissemination and monitoring, which are imperative to realise an increase in European citizens' experience of quality of care across. This concerns both access to one's own health information as well as supporting cross-border health care services. 2) [common specs] EHTEL advocates an "incremental" approach on data formats, interfaces, infrastructures, security and eIdentification to enable fast service innovation. - An incremental approach benefits from the foundation starting from the Recommendation on cross-border interoperability of EHR systems (2008) 3282: The LOST (Legal, Organisational, Semantic, Technical interoperability) approach has been extended to the recent ReEIF Interoperability Framework. It is also worthwhile to build on results from strategic interoperability projects like Antilope, eStandards, OpenMedicine, Assess CT and Euro-CAS. - Having started from data formats for unplanned care like patient summaries, data in full support of continuity of care will widen the scope and enhance the sustainability of supporting the health and care needs of the population: Already nowadays, patients using regularly routine health care in another member state seem to outnumber the persons in need of emergency care. - Seeing the example of telemedicine services, medical imaging seems always be a good frontrunner in cross-border digital health services: imaging data are today by definition digital and are low hanging fruits also in cross-border health data exchange. - For the architecture, EHTEL endorses a federated approach of accessing multiple distributed data sources and join them into a unified, platform neutral, user experience. - Furthermore, architecture and services should account for already evolving technology trends like storing medical data on mobile devices in addition to cloud-based infrastructures or establishing WhatsApp like, however highly secure, communication services. 3) [MS, stakeholders and EC] EHTEL proposes a participatory approach, starting from full data transparency and including the widest possible range of citizen and patient data, incl. wellness data, seems in the best interest of stakeholders. - The priority of interoperable patient data management must be use case driven, following demands and in support of care processes. - Existing standardisation results, like well-defined minimal datasets for disease and case management of chronic conditions should be utilised to optimise synergies and benefits. - Data donorship as well as complete opt-out must be the available and directly manageable consent options providing citizens and patients with the widest range of choices to keep the use of their data as limited as possible (if they so wish) as well as to allow them to serve - as data donor- the common good and other patients, e.g. those having the same condition. - Last but not least, the success of the digital transformation of health and care transforms interoperability into an ethical principle (see ethical tenets of the PROGRESSIVE project, cf. www.progressive-standards.org). - Consequentely, core activities on developing interoperable solutions from clinical and semantic standpoints need to be better known to and supported by the civic society. EHTEL, the European Health Telematics Association, convenes 50+ members who are actively planning and implementing innovative services and practices in the field of digital health. EHTEL does focus increasingly on Thought Leadership activities and tasks.
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