Hybrid event
xShare has also studied major public health data flows and mapped them to the six EHDS primary use domains (prescriptions, dispensations, patient summaries, lab reports, imaging, and discharge summaries). This work includes “IPS+R” (International Patient Summary for Research), which outlines data needed for clinical, public health, and population-level use cases. From these, xShare has prioritised three public health areas: healthcare-associated infections, antimicrobial resistance, and cancer.
xShare has been in close contact with the organisations that play a central role in collecting data in these three priority areas and has invited them to join this plugathon to discuss the new opportunities offered and the challenges ahead. Together with clinicians and medical information officers, we will also consider the impact on data collection processes, with the perspective of reaching near real-time monitoring, at least for key variables.
In addition, the EEHRxF may support new and innovative workflows for public and population health, with the active participation of patients, such as in the case of Long COVID. Together with public health analysts, SDOs, and clinicians, we will explore how the EEHRxF can support active patient discovery and contribute to an interactive and dynamic knowledge consolidation process.
This workshop therefore brings together representatives from across the entire value chain - including patients - to discuss innovative and sometimes disruptive data workflows that hold the promise of significant new benefits for both patients and society.
Session 1
9:15- 10:45 | Fluidifying current major current workflows
In this first session we will focus on the datasets which are already collected in all EU Member States, such as those related to infectious diseases.
Moderation by Eugenia Rinaldi, Charité, Germany.
Speakers:
- Thierry Klein, CHR Haute Senne Hospital - Reflecting on best strategies to connect hospital EHR in near real time to secondary use of data.
- Iztok Štotl, Medical Chamber of Slovenia (MCS) - Reflecting on the need for standardisation for CDs and NCDs.
- Bram Lestrade, European Society of Clinical Microbiology and Infectious Diseases (ESCMID) - study group dedicated to advancing AI, data standardization and interoperability in infectious disease (ESGAID) -Highlighting the challenges of interoperability in microbiology data.
- (online) Luis Alves de Sousa, European Centre for Disease Prevention and Control (ECDC) -The EU Public Health authority perspective on standardisation of infection-related data
- Giorgio Cangioli, HL7- Reflecting on wide profiling including primary and secondary use of data for specific health domain.
- Licínio Kustra Mano, SNOMED International - Reflecting on global terminology mapping and links between terminologies such as SNOMED-CT and data models.
- Ankur Krishnan, University of Heidelberg - Reflecting on the use of OMOP in microbiology.
Session 2
11:15- 12:45 | Addressing untapped public health needs - The Long Covid example
Can the EHDS help us to identify untapped needs and problems in our health systems and how can the patient play a key role in proposing innovative answers to those needs? This session will compare the different approaches followed by public health researchers and clinicians to address these challenges. They will discuss if and how the EEHRxF can help with identifying citizens and patients who meet specific clinical criteria. It will also feature how to collect patients' inputs in an actionable and meaningful way.
Moderated by Stefano Dalmiani- Fondazione Toscana Gabriele Monasterio (FGTM)- Italy
Speakers:
Carmen Van Looy, Not Recovered - Belgium: Carmen will share her patient experience from a country which has already a mature data sharing infrastructure. She will share with us all the efforts she has had to make as a key health data provider to make her data available.
Robert Vander Stichele, University of Ghent and I~HD- Belgium: The Belgian Long Covid GPs cohort - Robert will present the innovative approach followed by a cohort of Belgian general practioners, led by MD Marc Jamoul, PhD, which published “Long Covid, invisible disease”. The report documents its approach and findings with the direct involvement of 307 patients.
Bianca Boxma-de Klerk, EPI - LUMC - The Netherlands: The Post-Covid Netherlands Network (PCNN) - Led by Leiden University Medical Center, this network is a national partnership which brings together (university) hospitals, patient associations, paramedical partners, and public organisations such as the RIVM – Belgium’s national institute for public health and the environment.
Helena Leera, Helsinki University Hospital (HUS) - Finland: The Long Covid project - This EU project, led by Helsinki University Hospital (HUS), relies on six Long Covid cohorts (4 in Finland, 1 in the Netherlands, and 1 in Switzerland). Its main innovation is related to AI-based biomarker discovery on multimodal data. It proposes a Long Covid data portal to collect the data for LCS research, and is developing novel methods for harmonising and accessing integrated data.
Stefan Schrek - Advisor - European Commission - DG Sante: Stefan will update us on the initiatives of the Commission to create links between the most advanced initiatives in Europe and to promote best practices.