Use-Case 3: Cancer monitoring

No European standard-based data model is available for these data. On the semantic level, there have been however efforts to provide adapted vocabularies such as WHO ICD-O, ICD-10 and the TNM Classification of Malignant Tumours which are used by most registers and the US NCI Meta thesaurus as possible meta-integrator; Those resources are often completed by national resources (for pathological anatomy for example). All countries collect data according to local procedures. ECIS has established a Call for Data Protocol for European Population-Based Cancer Registries.

There have been limited attempts to better connect the cancer registries with data available in EHR systems.

All participating countries submit data according to the ECIS protocol. Data quality is checked using the  cancer data quality check list included in the Joint Research Centre (JRC) technical report

The data collection process follows thus a two steps approach: First at national level and then at European level with the responsibility of eventual mapping falling under the responsibility of the registry owner.

Although ECIS is relying on different datasets, the “incidence” data set is the most important one. It is currently submitted under CSV format containing 40 variables via a secured webportal. “The file should be a text file (.csv or .txt) with semi colon (;) separators and should include a header,with variables’ names and order as specified in the text below.PAT; MoB; YoB; Age; Sex; Geo_Code; Geo_Label; TUM; MoI; YoI; BoD; Topo; Morpho; Beh; Grade;Autopsy; Vit_stat; MoF; YoF; Surv_time; ICD; CoD; TNM_ed; cT; cN; cM; pT; pN; pM; ToS; Stage;Surgery; Rt; Cht ; Tt; It; Ht; Ot; SCT

Two tools have been developed to support users: A Data Structure Converter (DSC) software is available, as a protocol data adapter as well as a Quality Check Software (QCS), both available via this link: https://encr.eu/tools-for-registries

The EEHRxF format used in EHR is used to populate national and European cancer registries. The specific variables not currently included in the EEHRxF are provided through a dedicated pop-up with adapted user constraints. Local systems and Registers are synchronised through adapted connector.

Systems are enabled to send and receive data according to the EEHRxF.

• Patient Summary
• Laboratory Results
• (Imaging report)

National public health authorities can send EEHRxF- compliant cancer data to ECIS limiting to the minimum the need of transformation.

Use EEHRxF-compliant data collected right from the source to have data readily available to support research as well as public-health monitoring and decision-making in the field of cancer at National and European level.

Both administrative simplification and real time monitoring Exploit the EEHRxF to enable real- time monitoring of key variables related to cancer burden across Europe and preserve data quality by removing data transformations.

Enable real-time monitoring.

• Number of national cancer registries compatible with the format
• Number of submission to national portal/ECIS using the EEHRxF

Import/export functionalities for EHR and cancer registries using the EEHRxF

EEHRxF compliance and adherence to specific semantic constraints

Local system can identify relevant data (cancer diagnosis) and trigger a Patient Summary including the key variables agreed upon. The local system can manage related terminology bindings and mappings.

A (HL7 FHIR?) connector is existing to transfer and validate the data to the national register.

The national Cancer register has provided a digital script to local systems which allows to provide the data not covered by the EEHRxF.

A synchronisation process is established between national register and ECIS concerning the priority variables.

Security and Privacy Policies should already be in place.

Roles have been allocated within the organisation related to the responsibility of data production and the specific constraints attached (semantics, time).

Confirmation of a Cancer diagnostics.

Compliance to EEHRxF to format for priority variables by all cancer registries

Development needed by all actors (local EHR systems, Connector provider, Cancer Register and ECIS.

Charité, EHTEL, Sciensano

Yes

• A hospital is legally obliged to feed the national Cancer Register. This is however a time consuming process which is performed by dedicated staff.
• A new data collection process is established: Essential data such as diagnostics is provided on (near) real time while other data are provided at a later stage. The national Registers and the European Cancer Information System are now fed with near real time data while complete data collection follows later.
• The Hospital collects initial cancer information according to the EEHRxF format. Because of the EHDS the format and terminology of cancer data and EEHRxF are aligned and the complete data collection is facilitated without duplication of data.