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A new EHTEL working paper, written for the Laurel project, focuses on “The European Health Data Space and the Yellow Button: Operationalising Citizen Rights for Integrated Long-Term Care”. It shows how EHDS data rights can be shifted from legal text into everyday care practice. The way forward is to start with a simple, citizen-controlled Yellow Button.

The EHDS marks a turning point for European health policy. For the first time at the level of the European Union (EU), citizens now have the legal right to access their electronic health data, download it in interoperable formats, share it across providers and borders, and control which professionals can see it.

For Integrated Long-Term Care (I-LTC), continuity across hospitals, primary care, home care, social services and informal carers is everything. Hence, these citizen-oriented data legal rights could be transformative. But legal rights alone do not guarantee integration. Making the EHDS work for I-LTC requires practical mechanisms, aligned governance, digital maturity, and appropriate ecosystem incentives.

From Legal Right to Practical Tool

An August 2026 Laurel working paper, produced by EHTEL co-authors, is focused on a concrete example of how the gaps can be closed between legal right and practical implementation. The solution is the Yellow Button, a specification developed under the Horizon Europe xShare project. The Yellow Button builds on Catalonia’s well-established Blue Button, which is part of the La Meva Salut portal and has, since 2022, enabled Catalonian citizens to download a consolidated International Patient Summary. Now, the Yellow Button aims to bring the same one-click, citizen-controlled data-sharing to patient-facing apps and portals across the EU.

In practice, the Yellow Button lets citizens:

• Access structured summaries of their health data.
• Download interoperable priority data categories aligned with the Electronic Health Records Exchange Format (EEHRxF or “the format”).
• Share that data securely with professionals, carers, researchers or trusted apps.

For I-LTC specifically, the paper identifies four functions unlocked by the Yellow Button. They are:

• Continuity of information across care transitions.
• Coordination between professionals and informal carers.
• Empowerment of patients and families in day-to-day decision-making.
• Interoperability with telehealth, remote monitoring, and medication management tools.

Nevertheless, certain elements are still missing in this transition from legal right to practical tool.

What’s Still Missing

Missing elements range across technical issues; others are more organisational in focus or are related to governance.

Technically, data exchange still depends on messaging rather than structured data; functional status and social care information remain poorly integrated with health records; portals do not integrate redesigned workflows automatically; and providers may meet EHDS requirements on paper but do so without investing in actual interoperability.

Organisationally, digital literacy gaps among older adults and informal carers, and the absence of clear governance and consent frameworks, compound the risk that – rather than being a genuine enabler of integration – the EHDS may simply become a compliance exercise.

As a result, these technical, organisational, and governance challenges need to be mitigated. Concrete action is needed.

Three Pillars for Policy Action

To close the resulting gaps, the working paper sets out more than 10 recommendations which are listed under three strategic pillars:

• Effective national EHDS implementation
  This means – from the outset – embedding I-LTC use cases into “national transposition choices”, and expanding priority data categories to cover functional status and care plans.
• Citizen and carer empowerment
  Empowerment can occur through promoting actual tools like the Yellow Button, investing in digital literacy, and ensuring multilingual, accessible interfaces.
• Ecosystem stimulation and organisational readiness
  These improvements will occur by using certification and funding incentives to reward interoperability, and supporting organisations with tools like the Laurel Digital Maturity Assessment Toolkit (DMAT).

Synergy in a Triangle to Support the Future of I-LTC

Improved I-LTC will take place through a coherent policy triangle: all three sets of actions are already visible. Essentially, the EHDS provides the legal foundation, the Yellow Button demonstrates the operational feasibility of shared patient access to data, and the Laurel project supports the development of actionable policies that address organisational transformation.

Working together in synergy, these three areas of policy action can convert citizen-controlled data-sharing into a genuine catalyst for systemic integration rather than being just a simple download function. These moves are all about transforming policy into action.

By April 2027, the Laurel project plans to complete a White Paper on actionable I-LTC policy. The full Laurel working paper findings will feed directly into the eventually published White Paper.

Watch out for more info in the future on the White Paper!

For more information

Laurel and EHTEL report “The European Health Data Space and the Yellow Button: Operationalising Citizen Rights for Integrated Long-Term Care”

The coverage of the EHTEL-supported xShare and Laurel webinar on “From Rights to Reality: EHDS and Patient Needs in Integrated Long-Term Care”