European openEHR network
Background
@Severin Kohler started an initiative to explore if we could set up a collaboration between some of the HiGHmed partners and Karolinska Univeristy hospital and he had some other European partners in mind too, but had not had time to contact them yet. @Erik Sundvall suggested we make an open call via a wikipage (this one) and an openEHR Discourse discussion thread .
Aim
To make real federated cross border querying between institutions/hospitals/regions possible in practice on a regular basis (not just as a time limited project).
This will likely be starting with the, not so sensitive, use case of federated “feasability queries”, often used to figure out if you have enough patients meeting certain crieteria to do a statistically valid scientific study. Only a number is returned and there will usually be a bottom threshold to aviod responding to too specific, potentially privacy breaching queries.
How?
The tricky thing is agreement on structure and semantics, not technology. Semantically and technically we want to achieve “AQL-level” interoperability for as many parts as possible of the different clinical (sub)domains that enough network partners are interested in sharing queries for. That in practice means enough of the clinically interesting structures of the templates and their terminology system usage needs to be similar enough to successfully run the same AQL query at the different sites (that usually will use different natural languages). We do not expect all sites to use exactly the same template, for some AQL queries (for example regarding many vital parameters) just using the same archetypes will of course be enough to run cross-border queries, but for other use cases very general archetypes are used to compose nested structures and in those cases then shared design patterns will likely be needed.
A first step is to figure out what clinical (sub)domains potential partners are using openEHR for in practice, are working with template modeling for, or planning to start working on within approximately one year.
To be on the list:
You have to dare to continuously share your current work in public (via Git, CKM-project or similar), even though you might not consider it being finished or stable enough.
It may be necessary to change your own current models (e.g. in future template versions) to be able to run federated queries based on what you together design in the (sub)domain collaboration. Nobody will force you to change, but participating without then being able to run federated queries might not be of much value to you.
A first opportunity to discuss these things live is in the breaks at https://discourse.openehr.org/t/openehr-conference-17-november-arnhem-the-netherlands-a-community-event/4314
Project overview
A list of projects organized by the clinical domains they cover. If a project fits into several clinical domains, please add it to each of them. The number of patients included or what the study aims to include is optional and written in ranges (0–1000, 1000–10.000, 10.000–100.000).
If interested, provide a table sheet in the below format to severin.kohler@bih-charite.de.
Cardiology
Organization | Contact | Description | Working repositories (Git/CKM etc) | Actual or planned start of modeling | Actual or planned date for actual clinical use | Estimated or current number of patients included (Optional) |
|---|---|---|---|---|---|---|
Charité – Universitätsmedizin Berlin | Severin Kohler | CAEHR C- Outpatient care for coronary heart disease | 2023 Modeling started (CAEHR_C templates) | 2023 Q4 | 0-1000 | |
| Severin Kohler | Use Case Kardiology- relevant data for chronic heart failure | 2018 Modeling started | already in use | 0-1000 | |
Hannover Medical School | Matthias Gietzelt | Use Case Cardiology- relevant data for chronic heart failure |
| 2018 Modeling started | already in use | 1.000-10.000 |
Catalan Health Services | Jordi Piera and Gerard Carot | Use Case Cardilogy - relevant data for chronic heart failure |
|
| 100.000-200.000 | |
Heidelberg University Hospital | Angela Merzweiler | Use Case Kardiology- relevant data for chronic heart failure |
| 2018 Modeling started | already in use |
|
Infection/Hygiene
Organization | Contact | Description | Working repositories (Git/CKM etc) | Actual or planned start of modeling | Actual or planned date for actual clinical use | Estimated or current number of patients included (Optional) |
|---|---|---|---|---|---|---|
Charité – Universitätsmedizin Berlin | Severin Kohler | Use case Infection control- |
| 2018 Modeling started | already in use | 10.000-100.000 |
Hannover Medical School | Matthias Gietzelt | Use Case Infection control- predict outbreaks and track strains |
| 2018 Modeling started | already in use | 10.000-100.000 |
Heidelberg University Hospital | Angela Merzweiler | Use case Infection control- |
| 2018 Modeling started | already in use |
|
University Medicine Oldenburg (Carl von Ossietzky University Oldenburg) | Antje Wulff, Pascal Biermann | Use case Infection control & Project “RISK PRINCIPE” - risk prediction for blood stream infections
& Project “ELISE” - an learning, interoperable and smart expert system for pediatric intensive care - detection and prediction of SIRS, sepsis and organ dysfunctions |
| Modeling started and ongoing | local data integration started for all three use cases |
|
Oncology & Pathology
Regarding pathology the discussions/work described in involves many parties likely interested in being listed here sooner or later.
Organization | Contact | Description | Working repositories (Git/CKM etc) | Actual or planned start of modeling | Actual or planned date for actual clinical use | Estimated or current number of patients included (Optional) |
|---|---|---|---|---|---|---|
Karolinska University Hospital, Sweden. | @Erik Sundvall | Patient reported adverse effects of chemotherapy | 2022 | 2023 Q4 |
| |
Karolinska University Hospital, Sweden. | @Linda Aulin | POC with chemotherapy medication reporting to registry |
| 2023 Q3, focused on breast cancer | 2024 Q1/Q2 |
|
Hannover Medical School | Matthias Gietzelt | Use Case Oncology- setting up a virtual oncology center |
| 2018 Modeling started | already in use | 0-1.000 |
University Hospital Basel | Amanda Herbrand | Multidisciplinary tumorboards | TBA | Q1 2023 | Planned for Q2 2024 | TBA |
University Hospital Basel | Amanda Herbrand | PROMs in oncology and other specialties | TBA | Planned for Q1 2024 | Planned for Q2 2024 | TBA |
Catalan Health Services | Jordi Piera and Gerard Carot | Use Case Oncology - prescription patterns and survival in solid tumors |
|
| TBA |
Rehabilitation
Organization | Contact | Description | Working repositories (Git/CKM etc) | Actual or planned start of modeling | Actual or planned date for actual clinical use | Estimated or current number of patients included (Optional) |
|---|---|---|---|---|---|---|
Hannover Medical School | Matthias Gietzelt | CAEHR B- Rehabilitation after heart surgery |
| 2022 Modeling started (CAEHR_B templates) | 2023 Q4 | 0-1.000 |
Gastroenterology
Organization | Contact | Description | Working repositories (Git/CKM etc) | Actual or planned start of modeling | Actual or planned date for actual clinical use | Estimated or current number of patients included (Optional) |
|---|---|---|---|---|---|---|
Luxembourg Institute of Health (LIH) | @Vanessa Pereira | Clinnova IBD - Inflammatory Bowel Diseases Use case: precision medicine in IBD | Q2 2023 Modeling started | 2024 | - |
Rheumatology
Organization | Contact | Description | Working repositories (Git/CKM etc) | Actual or planned start of modeling | Actual or planned date for actual clinical use | Estimated or current number of patients included (Optional) |
|---|---|---|---|---|---|---|
Luxembourg Institute of Health (LIH) | @Vanessa Pereira | Clinnova RD - Rheumatic diseases | https://github.com/vanessa-pereira/Clinnova/blob/main/openEHR/README.md#rheumatic-diseases-rd | Q1 2024 Modeling to be started | Q3 2024 | - |
Luxembourg Institute of Health (LIH) | @Vanessa Pereira | Self-reported patient data from patients with osteoarthritis (PROs, physical activity, etc) | Q1 2024 | Q3 2024 | 500-1000 | |
Catalan Health Service | Jordi Piera and Gerard Carot | Use Case Rheumatology -Clinical profiles of high risk for inborn errors of immunity |
|
| 100.000-200.000 |
Neurology
Organization | Contact | Description | Working repositories (Git/CKM etc) | Actual or planned start of modeling | Actual or planned date for actual clinical use | Estimated or current number of patients included (Optional) |
|---|---|---|---|---|---|---|
Luxembourg Institute of Health (LIH) | @Vanessa Pereira | Clinnova MS - Multiple Sclerosis Use case: precision medicine in MS | https://github.com/vanessa-pereira/Clinnova/blob/main/openEHR/README.md#multiple-sclerosis-ms | 2024 Modeling to be started | 2024 | - |
University Medicine Oldenburg | Antje Wulff |
Monitoring and modelling post-COVID neurocognitive symptom trajectories, determinants and long-term impact on life and work, integration of data into the COFONI Lower Saxony Research Platform | tba | started |
| - |
Patient Summaries
Organization | Contact | Description | Working repositories (Git/CKM etc) | Actual or planned start of modeling | Actual or planned date for actual clinical use | Estimated or current number of patients included (Optional) |
|---|---|---|---|---|---|---|
Hannover Medical School | Matthias Gietzelt | Medical Informatics Core Data Set for Germany |
| 2018 Modeling started | already in use | 10.000-100.000 |
Heidelberg University Hospital | Angela Merzweiler | Medical Informatics Core Data Set for Germany |
| 2018 Modeling started | already in use |
|
Pneumology
Organization | Contact | Description | Working repositories (Git/CKM etc) | Actual or planned start of modeling | Actual or planned date for actual clinical use | Estimated or current number of patients included (Optional) |
|---|---|---|---|---|---|---|
Catalan Health Services | Jordi Piera and Gerard Carot | Use Case Pneumology - relevant data for Chronic Obstructive Pulmonary Disease (COPD) |
|
| 100.000-200.000 | |
Charité – Universitätsmedizin Berlin | Severin Kohler | CALM-QE | TBA | 2024 Modeling to be started |
| 0-1000 |
Psychiatry
Organization | Contact | Description | Working repositories (Git/CKM etc) | Actual or planned start of modeling | Actual or planned date for actual clinical use | Estimated or current number of patients included (Optional) |
|---|---|---|---|---|---|---|
Catalan Health Services | Jordi Piera and Gerard Carot | Use Case Psychiatry - relevant data for suicidial behaviours |
|
| 0-20.000 |
Metabolic Diseases
Organization | Contact | Description | Working repositories (Git/CKM etc) | Actual or planned start of modeling | Actual or planned date for actual clinical use | Estimated or current number of patients included (Optional) |
|---|---|---|---|---|---|---|
Catalan Health Services | Jordi Piera and Gerard Carot | Use Case Metabolic diseases - relevant data for obesity |
|
| 100.000-1.000.000 | |
University Medical Centre Ljubljana | Iztok Štotl | Use Case Relevant data for diabetes mellitus | TBA | 2022 | 2024 | 5.000-50.000 |
Audiology
Organization | Contact | Description | Working repositories (Git/CKM etc) | Actual or planned start of modeling | Actual or planned date for actual clinical use | Estimated or current number of patients included (Optional) |
|---|---|---|---|---|---|---|
University Medicine Oldenburg | Antje Wulff | Modeling of hearing/audiology related data in openEHR for Hearing4all excellence cluster |
| Started modeling 2023 |
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