With the support of Sorsix.
Approved trusted interoperability and patient access to data have been on the eHealth agenda for more than a decade. Today, many people acknowledge that progress in these two domains - the two critical bolts - has not met expectations. In fact, making concrete progress on them is key to delivering new, much expected, clinical and societal value. The proposed European Health Data Space (EHDS) regulation provides a solid response to this situation. Yet much remains to be done to translate the EHDS’s principles into concrete practice. In this session, answers came from several current and future European large-scale projects as well as actual positive, material, advances made in countries like Denmark. Speakers’ insights covered: what concrete progress means, what topics remain controversial, what are the proposed solutions, and which actors will be involved.
Power to the people. Are we really ready for this?
Zoltan Lantos, ESZFK – eHealth Service and Development Centre, Hungary
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Europe’s Digital Decade policy programme has set the target of 2030 for 100% of citizens having access to medical records online. Several pilot projects and technical developments that pave the way towards this target are underway and are making promising progress. The relevant technical capabilities are therefore likely to be available by the end of this decade. However, a people-centred approach requires much more.
This presentation demonstrated the initial steps that three key EU-funded projects – POTENTIAL, PATHeD, and Xt-EHR – will make in the upcoming time-period. Their three areas of action: European digital identity; the path to MyHealth; and electronic health records in the European Health Data Space.
The focus of this session was on the shift taking place from today’s scenarios towards new architectures (see slides 2 and 4) and the future use of technologies.
As a result, several problems can be highlighted. They include:
- The lack of a European platform model as an alternative to the US platform model.
- Insufficient attention to the foundations of the data value chain (see slide 9).
- The lack of clear motivations for individuals to act as a data centre (see slide 10).
The overall conclusion appears to be that Europe is generally ready for this transition, but there – nevertheless – remain several hurdles to overcome. Hence, people are encouraged to involve themselves in the work of the European Health Data Space.
Further useful complementary background is provided in a 50-page White Paper written by Professor Lantos and his co-authors from SITRA and its National Initiatives Network the meta-data subgroup, entitled “Navigating the Health Data Wilderness in the Dawn of the Data Age. Data Value Chain White Paper”.
Patient-centred access to care
Claus Duedal Pedersen, Sundhed.dk, Denmark
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Empowering patients starts with an easy, secure and user-friendly access to all health care data. Denmark’s experiences show how national standards pave the way for system integration across the health care system and enable the use of data for both citizens and health care professionals. This session was especially focused on the work of Sundhed.dk and Minsundhed – a user-centred health universe.
Denmark has materialised a portal and an app for Danish patients: they both give Danish citizens access to their personal data and information located anywhere in the healthcare system. Healthcare professionals also benefit and get access to their patients’ data. Sundhed.dk is therefore acting as an interoperability platform and a data intermediary for citizens and health professionals.
A Sundhed.dk user panel advances progress even further by helping with design and feedback.
Insights into Denmark’s way of working on development show that it occurs as the result of several features. It:
- Is based a step-by-step approach.
- Is founded on an integration platform.
- Was not launched as a ‘big bang’, and not ‘locked into’ a single IT supplier.
Denmark has long been on its digital health journey, unlike several countries which are much newer to the field. Like many other European countries, Denmark benefitted from the fact that – during the COVID 19 crisis – its citizens started to use both the portal and the app at much higher rates than in the past.
Now, people keen to implement similar ideas will be able to follow, in the near future, the work of the xShare project, that Denmark's MedCom is co-leading on. EHTEL members and friends interested in Denmark’s local trends and the country’s health IT market are encouraged to explore the content of an earlier 23 November 2023 webinar.
The last words came from moderator, Dalibor Frtunik of the IT firm, Sorsix based in both Australia and North Macedonia. He was able to draw attention to Sorsix’s own app, electronic health record, and platform, which provided an interesting second example of a country’s approach to digital health for citizens and healthcare professionals.