The European Health Data Space (EHDS) establishes new rights for citizens in terms of their electronic health data. These rights represent a potentially transformation shift for people who depend on Integrated Long-Term Care (I-LTC). Legislation alone, however, does not guarantee integration in practice.

This webinar was held on 22 June 2026, supported by EHTEL and the Laurel and xShare projects. The joint webinar brought together contributors from both projects and experts. 

The session aimed at:

• Placing patient and carer needs at the centre of I-LTC digital transformation.
• Examining how EHDS can contribute in practice to care integration.
• Drawing on concrete regional and European Union-level experiences to inform policy.
• Identifying what is still missing for citizens, people with long-term care needs, carers, and care systems.

The session asked three fundamental questions:

• What do patients, people with long-term care needs, and informal carers need from digital data sharing in integrated long-term care?
• How can citizen-mediated data sharing be guaranteed?
• Are current policies and tools answering these needs?

Watch the video below to see the presentations and the three speakers’ PowerPoints.⤵️

Takeaways

Among the key take-aways from the session were:

• The EHDS represents a genuine shift in rights for European Union (EU) citizens. But rights only become real through co-design, sustained implementation support, governance frameworks, and investment in digital literacy.
• Flanders Alivia and Caring Neighbourhoods models show that effective I-LTC integration needs digital tools and community-level infrastructure. Citizens, people in need of care, and informal carers need to be at the centre.
• The xShare Yellow Button provides a standards-based, one-click mechanism for data portability. Its care plan implementation guide is the most immediately relevant tool for I-LTC coordination.
• As EUPATI indicated, significant medical events in continuous care occur at moments of transition. Data portability at transition points is therefore a high-impact intervention for data safety and care quality.
• Participants identified cross-sector interoperability e.g., across health, social, and community care as the most important criterion for Yellow Button use in I-LTC.

Overview and general background

Sara Canella of EHTEL introduced the webinar and the Laurel project. She then introduced the three speakers.

Speakers' presentations

💠 Hanne Veugen: The Flanders Experience: Alivia and Caring Neighbourhoods

Flanders, in Belgium, has developed one of Europe’s most advanced models for person-centred I-LTC. Hanne presented two complementary pillars of this model: the Alivia digital care planning tool and the Caring Neighbourhoods initiative. She outlined how the two initiatives are being aligned with EHDS implementation requirements. The Flemish Department of Care sees a strong overlap between the content of the Alivia tool and EHDS patient summary requirements. Hence, Hanne observed how Vitalink – Belgium’s regional health data vault – will serve as the Flemish source of patient summary information, the backend for Alivia, and the gateway for cross-border data exchange via national contact points. Data will also be made available through the appropriate health data access governance bodies.

Hanne finally reflected on four key lessons for EHDS implementation related to: governance, consent-based access, what is needed by digital tools, and Belgium’s own experience as a multi-region, multi-language country – a microcosm for European-level challenges.

💠Mitchell Silva: The Patient Perspective: EUPATI and Meaningful Engagement in I-LTC

Mitchell Silva drew on his 15+ years of experience with digital health and patient engagement. He presented patient and carer perspectives on the EHDS and digital transformation in long-term care. He firmly argued that patients and informal carers are essential partners in the shaping of digital tools.

Mitchell explored patient pain points with current health data systems. Among these, he included data fragmentation, lack of easy access and sharing of one’s own health records, digital literacy gaps, and a lack of data portability – especially at transition points in care provision. He also mentioned an artificial intelligence (AI) gap. He argued in favour of “from rights to empowerment” – where the EHDS offers an opportunity to shift from theoretical entitlement to genuine citizen control over health (or care) data.

Finally, the European Patients Academy on Therapeutic Innovation, EUPATI, empowers patients to be involved all across the health innovation ecosystem. EUPATI provides many educational resources that enable patients and researchers to collaborate and co-create. Globally, EUPATI has 8+ million toolbox users and has trained more than 500 EUPATI Fellows. An open access OpenClassroom on Digital Health is freely available online. It includes a dedicated EHDS module.

💠Michael Strübin: The Yellow Button and xShare: Citizen Data Portability in Action

Michael Strübin presented the xShare project which is operationalising EHDS citizen rights through the development of a Yellow Button and an EHR. His presentation focused on what these two tools can do for I-LTC.

The Yellow Button vision is of a one-click mechanism that enables any citizen to download and share their health data in interoperable formats via mobile apps or patient portals. It helps to make EHDS access rights immediately actionable. It is intended to be featured Europe-wide on health portals and patient apps. The European Electronic Health Record Exchange Format (“the format”) is based on international standards. Definition specifications of the format will be published by 26 March 2027. Internally in the project, seven Yellow Button implementations have been completed. Until 17 July 2026, xShare is encouraging digital solutions which relate to care plans.

Michael confirmed that the two standards are not limited to acute healthcare providers. Any organisation that handles priority data categories is eligible to implement these standards: they include long-term care providers, social care agencies, and community services. The xShare care plan implementation guide is particularly relevant for I-LTC pathways and may eventually become a formal EHDS data category.

Audience engagement and facilitated discussion

The promotion of the workshop had already “set the scene” for the conversation with three important questions. The webinar audience got further engaged in expressing their voice by answering three live polls on:

• The awareness of people living with care needs of their right to control their health data.
• The biggest barrier to making the EHDS a reality for I-LTC.
• What matters most for a one-click data-sharing tool to be truly useful in long-term care.

In a discussion with the three speakers and the audience, moderator, Sophia Schlette then explore five main themes:

• Overcoming structural barriers, on which Hanne drew on the experiences from Flanders.
• Speed, timelines, and acceleration, on which Mitchell offered a view on AI tools, early local pilots, design thinking (one click only), and single sign-ons.
• Incentives, inertia, and cultural change, where a variety of ideas were put forward.
• Remaining gap(s): Nothing in the EHDS prevents long-term care providers, and others, from implementing Yellow Button-compatible data-sharing. In I-LTC contexts, audience polling indicated that “working across health, social, and community care” is the single most important feature which would make the Yellow Button useful.
• Visions for 2030: The three speakers each offered their forward-looking views. They included a “shared, trusted source of truth”; being realistic about the timelines of shared data standards; and the use of a Yellow Button-like feature in national citizen health apps across Europe.

Conclusions and next steps

Watch out for more on the work of both the xShare and Laurel projects over the end of 2026 and start of 2027, especially in terms of the potential for next steps.

During summer 2026, Laurel will be publishing a position paper on the operationalisation of citizens’ rights in I(L-TC) in terms of the shift from legal rights to real care. The project will, ultimately, also produce a White Paper on actionable long-term actions in this field.

For more information

See the Laurel project. 

See the xShare project.

See EUPATI.