With the support of ESHIA and xShare

The right of patients to access their own health data isn’t only great for individuals who are keen to know more about their health. Indeed, it opens the door to an ecosystem of innovative solutions that wouldn’t be possible if the data were to remain locked inside hospitals or labs. The xShare Yellow Button has a lot to offer in this regard, and is making a lot of positive progress.

Introduction

Moderator: Shane Fitch, Lovexair, Spain

The session’s ultimate focus was on the xShare Yellow Button but also covered the use of artificial intelligence (AI), particularly in discussions among panellists.

Shane emphasised the general enlarging of the scope in patients’ rights. As background, she drew attention to the key patients’ rights set out in Articles 3-10 in Chapter II of the European Health Data Space (EHDS) regulation in relation to the primary use of personal health data.

Panellists

Stefano Dalmiani,  Fondazione Toscana Gabriele Monasterio, Italy

Stefano started from insights into the EHDS and the xShare Yellow Button (outlined by Catherine Chronaki, Secretary-General of HL7 Europe, in the 21 January 2026 opening plenary session of the Radical Health Festival Helsinki).

He named three important areas of work applied by the xShare project in order to achieve the vision of the xShare Yellow Button. The three areas are:

• Producing a Yellow Button for patients to be able to access, and ultimately share easily, their health data. This will be a “click ‘n share” way for a person to “one-time share”, and download, their own health data.
• Developing a hub, called ESHIA – which forms part of the xShare project and which focuses on standardisation of health data (and other standards areas).
• Developing an industry label, which has three levels – bronze, silver, and gold.

Stefano outlined in some detail how the xShare Yellow Button will work e.g., the several types of report that can be downloaded which range from patient summaries to discharge reports: Annex I of the EHDS is useful in this regard); the contacts between healthcare professionals and patients; the example of discharge documentation; and the technical reference architecture. He emphasised the ease of use that can materialise when a yellow (download) button is simply placed on the right-hand side of an electronic health record. Today the button is undergoing testing to ensure that it can in reality become such an “easy, reliable service” and/or process.

In terms of overall challenges, Stefano highlighted the difficulties that there may be for a country like his own – Italy, with its 20 different regions – to seek to apply the terms and conditions of the EHDS regulation.

Carla Alvarez Costa & Carme Pratdepàdua i Bufil, Tic Salut Social, Spain

Carla and Carme co-presented. Carla outlined the background to xShare Yellow Button use in the autonomous region of Catalunya in Spain.

Catalunya started its own digital transformation of the healthcare sector 40+ years ago. Nevertheless, Carla indicated how fragmentation can occur in Spanish and Catalunyan settings (Spain has 17 autonomous regions which each work on health and care): she emphasised the need in healthcare to cover the work of both the public sector and the private sector.

Earlier this decade, Catalunya launched its own Blue Button in 2023, a predecessor to xShare’s Yellow Button. The region is now exploring the application of the xShare Yellow Button in two private hospitals. One of these hospitals has received an xShare silver label, one of xShare’s industry labels, for its work.

Carme then delved into the use of the xShare industry label and its three levels. As an approach, she said that the label is “really important for industry to get ready for the EHDS.” In xShare, the Catalunyan region has come to an agreement with two private hospitals – and is now at a pilot stage with them – to test out the gold variant of the industry label. In the region, there are also lots of companies that are interested in entering the xShare award scheme to compete to acquire an industry label. Besides this labelling exercise, grants, and a helpful implementation guide are also on offer.

Carme drew attention specifically to the work of two Catalan organisations.

• The Catalan Association of Health Entities will run a pitching contest called ‘Finding solutions for the future’ on 2-5 March 2026 at the FY4N at the Mobile World Congress in Barcelona. The competition is aimed at health sector startups which have innovative solutions that are ready for implementation.
• The Catalan Hospital Union is also an association of interest.

Shane Fitch, Lovexair, Spain

Shane highlighted the importance of the engagement of citizens in handling digital health and their own health data. She emphasised the interest of Lovexair – a respiratory conditions’ foundation of which she is president – in health, well-being, air, and the planet. She outlined six potential areas of engagement and the importance of a variety of technologies that can deal with e.g., self-reported data and geospatial data. She referred to the benefits and opportunities perceived by, and for, citizens of health data exchange. She indicated 10 ways in which citizens can be assisted by non-governmental or civic organisations like Lovexair in their key job of “citizen hand-holding”. Currently, Lovexair’s Happy Air digital ecosystem is working seriously towards compliance with EHDS timelines, with the aim of promoting equitable access to health data and health services.

Mikael Rinnetmäki, Sitra, Finland

Mikael drew attention to three pain points with the EHDS. He referred to difficulties with patients’ access to health data: in which there is “too much downloading and uploading” and the need to change to easier ways of accessing data. In this respect, he drew attention to the original United States-based work on the Blue Button and today’s shift instead towards the use of smart apps. Mikael also drew attention to the words of Petra Wilson of Health Connect Partners (who moderated the morning’s plenary session), about developing an awareness that health data spaces are much broader in their coverage than just the EHDS regulation itself. As he said, health data spaces are “when you actually have data-sharing”.

Mikael identified how the Finnish Health Data Hackathon, held as a side-event to the Radical Health Festival, had addressed these three pain points. Two tracks had focused on: patient access to health data, and care plans and clinical reasoning. Good progress had been made in the hackathon. The tracks demonstrated successful initiatives e.g., by the City of Helsinki; what people/citizens actually want to do with their own health data; and what can be done in relation to care plans (which are not included in the mandate of the EHDS regulation yet, but on which the hackathon made advances e.g., on an HL7 FHIR® implementation guide).

Mikael’s comments were made in the context of his work with Sitra, an innovation partner that drives societal renewal in Finland, Europe, and internationally. There, he leads on the VALO2 project, based on the original VALO project - funded by the Nordic Council of Ministers to strengthen Nordic cooperation in the implementation of the EHDS as well as in secondary uses of health data.

Discussion

Towards the end of the session came some technical discussions on topics like:

• The Yellow Button as a graphical user interface and as a way that patients can “apply [their] own data portability rights”. More details were offered on the button’s experimental use and potential scale-up.
• The delivery of data in a structured format. Creating systems that produce both useful narrative/discursive data and structured data is perceived as a “really delicate balance”.
• The use of AI to help produce structured/coded data. Here, on the one side, emerged the critical importance of data quality and of doing medical coding in various stages (as in clinical trials). On the other side, the fact was cited that Finnish start-ups have already made successful use of AI (e.g., Claude AI) to help them with coding.
• How start-ups and young entrepreneurs view the EHDS. It seems that in Finland, startups are “really willing to adopt the EHDS, and it’s really easy for them” (when compared to work done on legacy EHR systems).

If the xShare Yellow Button piques your own interest, therefore, here are two useful steps that you can take:

• Make a submission to the xShare open call(s) for early Yellow Button adopters.
• Read a useful Health Management article on the development of the Yellow Button.

Polls

Several short polls were answered by 25+ of the session attendees. They offered participants’ views on:

✅ Barriers to health data use. The biggest barrier to the use of the people’s own health data – “it’s communication – as usual” – is probably a non-technical issue!

✅ Important factors relating to access to health data include: perceived limited personal benefits, low digital health literacy, poor user experiences, and a fear of data misuse.

✅ Other polls examined:

• Chief elements of importance for health data use.
• Questions related to data access.
• Methods for access perceived as useful for citizens.
• Good ways to address dealing with fragmentationg., European-level platforms.

In conclusion

The session covered many different  key issues around innovating for patient access in everyday life to their health data. Its polls hint at some ways in which this can be done. 

To know more about further developments:

• Visit the xShare website.
• Especially took a look at xShare’s open calls. 

Look out also for more news in the short-term future on the work of the EHDS Implementers’ Task Force and the various working papers!