Citizen-centric data-sharing is a crucial activity for Europe's health and care systems and Europe's patients. Ways of applying this approach are core to Europe's proposed European Health Data Space (EHDS). EHTEL's General Secretary, Marc Lange, led off with all the latest ideas at February's Digital Health Nordic event.
On 13 February 2024, Digital Health Nordic held a hybrid event - based out of Helsinki in Finland. The event's chief message was that entering a new era of digital healthcare can elevate people's healthcare experience to unprecedented heights. Treatments and proactive care are starting to undergo meticulous personalisation to people's unique needs. What is termed Healthcare 4.0 is now a reality within people's grasp.
EHTEL, and one of the association's members, the Scottish Government, both contributed important input to the event.
A main focus of the event's content was citizen-centric data-sharing. EHTEL's Marc Lange, contributed his insights into this inspiring topic and showed how it means getting value. He emphasised how - with the eventual acceptance of the European Health Data Space (EHDS) Regulation - people in Europe will be able to access and share their health data easily.
His talk was in three parts:
- European Union policy objectives and the current state-of-play
- The experience of a patient in 2023-2024
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EHTEL's own vision of the Regulation's priorities.
State-of-play: By 2030, Europe's ambition is that 100% of its citizens will have access to their electronic medical records ("e-records"). Article 3 of the draft EHDS Regulation draws especial attention to how this will be done, with several compromise texts developed. Baseline measurements of progress until 2022 made in Europe towards this goal are already available, with some types of health or medical data more easily available than others.
A patient's experience: For a patient with a chronic condition, it can be very meaningful to have one's health data electronically available. Examples were shown of what this availability can mean to a patient in the Walloon region of Belgium: for example, what a patient needs to know before, or while, sharing his/her data. Overall, accessing one's own health data goes beyond being in control of one's own health data and one's own privacy.
EHTEL's vision: As an association, EHTEL has a vision of what are the EHDS priorities. It calls this a "citizen-centric data-sharing approach" which enables citizens to become "data-sharing actors". To develop these views, EHTEL has drawn on several sources: for example, the United States of America's "Blue Button" initiative, which has been applied by EHTEL member, TIC Salut Social. EHTEL is now involved in the "Yellow Button" efforts, a key element of the xShare project's EHR Xchange Format. In addition, the association's ideas took root in the InteropEHRate collaboration focused on data protocols and data-sharing for research purposes. They also reflect the recent efforts of the POTENTIAL project on the use of digital identities under the Myhealth@EU initiative.
All these initiatives, in combination, show that innovation is the way forward!
Watch the recording of the presentation here.
Download Marc Lange's presentation below ⤵️