On 28 September 2022, InteropEHRate held its final conference in Liége, Belgium, and remotely. The event was organised in two parts. In the morning, participants learned from the project results and implementation pilots. In the afternoon, multiple stakeholders discussed the implications of a citizen-centric health data sharing approach to improve care and research.
InteropEHRate aims to support people’s health by opening up to them new ways to make health data available when and where needed. To make this possible, key health data is managed in “patients’ hands”, i.e., through Smart EHRs (S-EHR) on mobile devices. Data is always transferred via highly secure channels including direct device to device (D2D) communication. Patients are in full control of their data and its pathways.
Scroll down to read a summary and watch the videos of all the presentations:
- Presentation of the InteropEHRate project
- Session 1: InteropEHRate solutions for health care data-sharing
- Session 2: InteropEHRate solutions for health care data-sharing
- Session 3: European health data sharing policies and the contribution of InteropEHRate
- Session 4: Implementing EHDS: InteropEHRate in support of National/Regional Health Authorities’ health data-sharing policies
- Session 5. The road ahead: exploitation opportunities, impact assessment and governance of InteropEHRate
Presentation of the InteropEHRate project
In the context of enabling citizen-centric data sharing, Francesco Torelli (Engineering, Italy) introduced the InteropEHRate project. He outlined the project background; goal; vision; technical architectures, specifications, and especially its protocols. He also covered the range of actors involved in different user scenarios. Patients are at the centre, and they use QR codes to upload their data from their mobile phones. Included in the process are healthcare professionals, publishers, research centres, and cloud providers. Overall, the InteropEHRate framework consists of a number of prototypes, four reference implementations, and various libraries, services, and tools.
Enabling citizen-centric EHR data sharing [PDF presentation] – Francesco Torelli, InteropEHRate technical coordinator (Engineering, Italy)
Session 1: InteropEHRate solutions for health care data-sharing
Through both videos and formal presentations, the first conference session explored several InteropEHRate solutions for healthcare data-sharing. InteropEHRate data-sharing was shown from the perspectives of both the patient and the healthcare professional. There were views on offer of patients controlling the sharing of their own data and connecting while using secure forms of eID, during a planned appointment or in an emergency – especially in hospital settings. Insights were offered by real-life patients into InteropEHRate’s four pilot project experiences: the interviewees focused on the importance of having access to their own health data, reports, and results on their own smart phones. At the session end, the relationship was explored of InteropEHRate’s technical solutions with various standards, like the HL7® FHIR® profile. An in-depth discussion on upcoming challenges focused on the views of experts from health authority, technical, and industrial/commercial fields, e.g., on apps labelling.
How does a citizen get access, control and share health data? [VIDEO presentation] – Vincent Keunen (Andaman7, Belgium)
How does a healthcare professional give and take health data? [VIDEO presentation]- Adrian Bradu (SIMAVI, Romania)
The CHU Liège InteropEHRate pilot [VIDEO presentation] – Patrick Duflot (CHU Liège, Belgium)
Interoperability profiles for health data sharing [PDF presentation] – Marcel Klötgen (Fraunhofer ISST, Germany)
Session 2: InteropEHRate solutions for health research data-sharing
The second conference session shifted towards InteropEHRate’s solutions for data-sharing for health research purposes. The topic was handled from clinical, technical, and industrial perspectives. For example, focus groups of healthcare professionals helped to indicate experts’ positive responses to the resulting research opportunities. The project also showed how an open research network could function. The INTERVAL study validated various research study objectives: it ran several pilot projects in countries like Belgium, Greece, and Italy – they covered challenges like consent, data collection/retrieval, data anonymisation / pseudonymisation, data security, and potential data leaks; they also pointed out what data can remain on the patient’s own phone and what data can be retrieved from hospitals themselves. Overall, this session showed how a proof-of-concept could assist with the real-world collection of data direct from patients. Three panellists offered views on the potential extension or expansion of InteropEHRate’s work to other research fields and what might be some of its limitations.
InteropEHRate solutions for health research data-sharing [PDF presentation] – Stefano Dalmiani (Fondazione Toscana Gabriele Monasterio, Italy)
Sharing health data for research: Technical perspective [PDF presentation] – Gabor Bella (University of Trento, Italy)
How does a citizen contribute to medical research? [VIDEO presentation]- Vincent Keunen (Andaman7, Belgium)
Session 3: European health data sharing policies and the contribution of InteropEHRate
The third conference session focused on the wider European context of the European health data space. Two views of the data space were explored: one from the European Commission and another from the InteropEHRate project.
An introduction to the background of how the proposed space will be used to harness the power of health data for people, patients, and innovation started the session. Afterwards, the kinds of contributions made by the InteropEHRate project followed. The data space proposal, published in May 2022 by the European Commission, can be associated with six other legal initiatives: they are related to the European Health Union as well as AI; cyber-security; data governance; data protection; and medical devices. Two key European initiatives are linked with the building of the data space: MyHealth@EU and HealthData@EU. The session examined two specific legal articles relevant to the data space – Articles 3 and 40 – on the rights of individuals regarding their own health data, and data altruism in the healthcare sector. It was also suggested that among the main benefits from the space for individuals are the strengthened security of their healthcare data.
InteropEHRate’s view of digital wellness and healthcare in several medical fields e.g., breast cancer and Type 2 diabetes, were covered as well as of digital learning health systems. Emphasis was placed on the way in which the space can help with diagnosis and personalised coaching. InteropEHRate’s relationship with various legal articles in the European Health Data Space, and the project’s potential conformance to them, was explored in detail. Two key technologies can assist – AI and the Internet of Things. Nevertheless, a “challenging journey” lies ahead.
A discussion among panellists offered insights into other European projects, e.g., Smart4Health, which show synergy with InteropEHRate. Panel members scrutinised the speed at which eventual implementation of the data space can take place in all the European member states; they highlighted the opportunities offered by growth in parallel movements like “hospitalisation without walls”; and they delved into patients’ continuing anxieties about the spread of digital health and health data-sharing.
European Health Data Space: Harnessing the power of health data for people, patients and innovation [PDF presentation] – Carole Rouaud (DG SANTE, European Commission)
Enabling citizen-centred health ecosystems: Activating citizens through the power of data and technology [PDF presentation] – Francesco Torelli, InteropEHRate technical coordinator (Engineering, Italy)
Session 4: Implementing EHDS: InteropEHRate in support of National/Regional Health Authorities’ health data-sharing policies
In the fourth conference session, on the semantic interoperability front, InteropEHRate explored several scenarios. Various solutions already exist regarding national/international standards and supporting technologies. Throughout the project duration, InteropEHRate has been nominated as an outstanding innovation twice, in terms of semantic interoperability, under the European Commission’s Innovation Radar. Nevertheless, three key challenges still exist. Among the difficulties remain full interoperability, standards and supporting tools, and the continuation of human effort.
A new European project is due to start in January 2023, to be called PATHeD. It will be founded on value-based principles and a European value set, particularly regarding trustworthy AI. With a focus on health data literacy, and messages emerging from the TEHDAS initiative, the project will place considerable emphasis on citizens’ central role in sharing their (health) data. For the project, building trust with citizens is a main prerequisite that underpins (health) data-sharing.
Semantic tools and methodology for healthcare data interoperability [PDF presentation] - Simone Bocca (University of Trento, Italy)
Implementing the EHDS: InteropEHRate, PATHeD and beyond [PDF presentation] – Zoltán Lantos (PATHeD, Hungary)
Session 5. The road ahead: exploitation opportunities, impact assessment and governance of InteropEHRate
The fifth and final conference session looked at the road ahead for InteropEHRate. It covers three areas of work: exploitation; impact; and governance.
Having investigated the project’s potential value proposition and key exploitable results, the consortium’s market analysis has indicated that the project is well positioned vis-à-vis its competitors. A SWOT analysis has highlighted opportunities for both InteropEHRate’s open specification approach and its various tools, including up to six specialist areas of activity. In the future, InteropEHRate could build a community with a number of other European projects and initiatives.
The consortium has designed a governance model, and related processes, on what and how to conduct/manage citizen-centric data-sharing which will be further developed until 2025. It also reviewed some 15 impact assessment methods, which especially showed the usefulness of using a societal cost benefit analysis called ASSIST. An InteropEHRate guidance document is dedicated to helping e.g., European member state-based decision-makers determine whether to fund/use the InteropEHRate approach for their own future healthcare-related activities.
Summing up, project leader, Matteo Melideo (Engineering, Italy) reflected on how much – over its four years of activity – InteropEHRate has been at the heart of work in Europe, and beyond. It widens the door to further exploration of the InteropEHRate open specification!
Exploitation opportunities [PDF presentation] – Sotiris Athanassopoulos (BYTE, Greece)
Governance model [PDF presentation] – Tino Martí (EHTEL)
Socioeconomic Impact Assessment [PDF presentation] – Malte von Tottleben (empirica, Germany)
To learn more about the project visit the InteropEHRate page.