Athens, 19 January 2024 – The XpanDH Community of Doers Workshop during the Athens Digital Health Week brought together a dynamic mix of patients, professionals and students eager to unlock the potential of the European Electronic Health Record Exchange Format (EEHRxF) in digital health ecosystems. The workshop was organised by IDIKA, Gnomon Informatics and KETEKNY which reached out to the local communities of professionals, patients and programmers.
Henrique Martins, Project Coordinator of XpanDH, kicked off the workshop with a journey through the evolution of ecosystems since 2011. Henrique stressed the need for co-creation, boldly tackling the challenges of uniting patients and developers from diverse corners of the globe.
Since 2011, there has been a continuous warm-up, focusing on adjusting and preparing for ecosystem expansion. Henrique emphasized the need for co-creation and collaboration, addressing the challenges of involving patients and developers from different countries. The discussion highlighted the importance of establishing a useful service at the epicentre rather than focusing solely on the EEHRxF.
Co-Creation Approach and Roadmap
The workshop delved into the co-creation approach, refining use cases and moving towards tested proof of concepts. The roadmap for implementation involves launching open calls, collaborating with other events, and eventually handing over projects to others for continued development.
George Kapetanakis Addresses Gaps in Cancer Care
George Kapetanakis, President of the Hellenic Cancer Federation – ELLOK discussed the growing communication gap between patients and healthcare providers, particularly in the context of cancer. He stressed the importance of services revolving around the patient and the confidentiality of health data. Education, support for patients, and provisions for survivorship and end-of-life care were also highlighted.
IDIKA and the European Health Data Space (EHDS): Empowering Citizens with Digital Health Data
IDIKA is currently the national contact point for eHealth, running all cross-border operations representing the Greek State. It also operates basic digital health services such as the National ePrescription system, the national EHR system and the Cancer registry. IDIKA envisions to empower citizens by providing digital access to health data. The upcoming EHDS regulation makes it mandatory for Member States to participate in the MyHealth@EU infrastructure as well as adopting the EEHRxF. The workshop was attended by Elpida Fotiadou, Head of eHealth Horizontal Actions Directorate at IDIKA SA (e-Government Center for Social Security and eHealth Services
Key Discussions on Patient Experience Reports and Digital Literacy
Participants engaged in discussions about patient experience reports, with suggestions for guidelines and potential collaboration with existing frameworks. The importance of digital literacy, especially with layered information, was emphasized. The workshop also addressed the format for collaboration, emphasizing the need for participants with specific characteristics, including creativity, commitment, and an understanding of patients’ experiences. Specific characteristics for programmers, patients, and professionals were outlined. The importance of simple face-to-face collaboration tools and the role of facilitators with diverse backgrounds were discussed. One participant highlighted the difficulty of breaking clinicians out of their silos, suggesting a national approach starting with different countries’ communities.
The workshop concluded with a commitment to ongoing collaboration, emphasizing the significance of involving diverse perspectives for the successful development of digital health ecosystems.
Follow up activities
As a result of the workshop, Gnomon and IDIKA will initiate one discussion group of patients, programmers and professionals. The XpanDH Community of Doers and Co-creators will continue its experimentation during the whole year of 2024 focusing on two major events as meeting placeholders, the IHE-Europe Connectathon week in June 2024 and the XpanDH EEHRxF Summit in December 2024.