At XpanDH’s EHR Exchange Format Expert Summit, held in Brussels on 12th December, Dr Veli Stroetmann, Director of empirica, a partner in both XpanDH and xShare, presented on the eHealth ecosystem and the EEHRxF as a central pillar of it.
The eHealth ecosystem at the European level aims to facilitate the safe and efficient cross-border exchange of data for healthcare and research purposes. Connecting with XpanDH’s ecosystem is therefore vital for efficient and healthy synergies between current and upcoming projects.
Four key pillars represent both the conception and current state of the eHealth ecosystem.
The first pillar is the X-Nets. These are networks of stakeholders (European Union or Member State organisations) that form the existing pan-European (Digital) Health space. They potentially use or benefit from the widest adoption of the EEHRxF. They are inspired by the Hospitals-on-Fast Healthcare Interoperability Resources (FHIR) initiative, which connects hundreds of healthcare providers across Europe and has 20 organisations ranging from patient associations to industries already engaged.
The second pillar is the community of doers, which in project parlance is also referred to as the 3C-3P community (Co-creation Community of Patients, Professionals, and Programmers). It promotes digital health interoperability through an open-source, collaborative approach that invites end-users to participate and support IT developers.
The third pillar involves engaging with relevant European Union research and innovation projects. The eHealth ecosystem can gain from these projects by discovering new use cases, domain-specific data sets, and extensions to format possibilities. At the same time, these projects can benefit from the eHealth ecosystem by receiving its full support service infrastructure.
The fourth pillar is the outcome of actively participating in national implementation and development initiatives. This helps develop bilateral learning processes on best practices, Member States’ specifications, and infrastructure maintenance. This entire ecosystem, with its four pillars, must maintain synergies with xShare, the Joint Action-09/Xt-EHR, and obviously with all the guidelines established by the corresponding institutions.
The complexity of the ecosystem has prompted us in the last months of 2023 to reflect on different points. Here are some of the steps to be taken as a result:
- Improve awareness and understanding of EEHRxF and European Health Data Space (EHDS) values, principles, and ecosystem.
- Improve patients’ understanding of the value of exchangeable data resulting from the implementation of IPS and other EEHRxF domains.
- When designing for value for patients, integrate their direct perspective by considering what would be worth pressing the xShare project button for.
- Encourage and support communities of doers, taking a broad view across the full implementation pathway from policy to care and social innovation.
Empirica conducted a short survey to gather the stakeholders’ thoughts on the present and future of these healthcare digitalisation initiatives. Launched shortly before the Summit, it was answered by 48 participants, including health professionals (11), researchers (10), representatives of eHealth agencies (10), industry and SDOs (8), authorities (7), and citizens (2). The stakeholders were required to respond to three questions in a free-text format.
The first question inquired about respondents’ level and type of contribution to the creation of the format. A significant portion of the responses highlighted technical contributions, particularly in the areas of interoperability, standardization, testing, and semantics. Participants also emphasized their roles as experts within a broad ecosystem, advocating for its necessary cohesion.
The second question assessed both the plausibility of freely accessible and shareable health data as well as the expectations on the timing of its implementation. Most of the responses were optimistic about the materialisation of the core objectives, estimating the timing for functional implementation at 5 to 10 years from now.
Finally, the third question inquired about possibilities and methods of accelerating this. Optimism was evident in these responses, with much emphasis on the technical work already performed. Yet, a certain degree of scepticism also emerged, citing the preference of some for a stable but not-so-rapid process, as well as the difficulty of harmonizing and connecting the efforts at the European level with the individuality of each country.
Overall, stakeholders have a positive outlook on the process of creating an eHealth infrastructure and services that will benefit citizens. The consistent emphasis on harmony among all parties involved is a clear sign that transparency in ecosystem building and information exchange is more than a tool in the implementation of EEHRxF but rather a principle to be followed.