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Work Package 5:
Monitoring
WP 5
Monitoring
CSF, Finland
Work Package Summary
The overall objective is to improve existing and develop new standards for data sharing and standardisation across countries, to improve monitoring and comparison of screening programs, and to enable cross-border research using screening data.
Specific objectives are as follows:
1) To assess the ethical, legal and social implications of data sharing;
2) To develop open-source tools that build on top of existing European cancer screening indicators and data platforms, thus enabling monitoring, data sharing and research with both individual level and aggregated data;
3) To support monitoring of cancer screening both nationally and on a European level;
4) To facilitate harmonised collection of cancer screening data across different screening programs;
5) To evaluate possibilities of the European Health Data Space in context of cancer screening.
CSF, Finland
Tasks
| Task Nr | Task Name | Description | Participants |
| T5.1 | Ethical, Legal and Social Implications (ELSI) assessment of data sharing | ELSI assessment of data sharing will be conducted focusing on three levels: (1) individual (patient) level, specifically on the use of next-generation sequencing (NGS), which presents challenges for securing truly informed consent and honouring patient preferences for the many different types of genetic information potentially yielded by NGS); (2) institutional level represented by various stakeholders (e.g. professional organisations in genetics and oncology, test laboratories, clinical trials networks) with vested interests in deciding which types of sequencing results to analyse and return to patients or research participants, and how to manage clinical implications; and (3) societal level, e.g. questions of resource allocation and priority setting. This task will be led by DYPEDE, Greece. | LU ISPRO, PHC DYPEDE OUS, CSF, AUSLRE, LSMUKK, IACS, ISS, IRFMN |
| T5.2 | Assessment of data availability and exchange-related issues focusing also on new and riskbased screening programs | A survey will be conducted to assess which data are available for the indicators on quality of cancer screening process and dimensions of population sub-group or stratified analyses. The survey results will provide useful information to plan the data collection for the third screening report within the ECIS (CanScreen platform) highlighting areas and directions for improving monitoring efforts in European countries. Information about coding systems and data structure will be collected, which will provide relevant input to the activities planned in tasks 5.4 and 5.5 aimed to transform data contained within local databases into a common format (data model) and to define a common representation (terminologies, vocabularies, coding schemes), in order to perform analyses using standard analytic routines. This task will be led by CPO, Italy, co-led by CSF, Finland. | LU THL, ISPRO, UZIS, NKIP TAI, MOH CY CPO, CSF BIPS, IACS, Fisabio, NCI, DYPEDE, NNGYK, IU NAMSU |
| T5.3 | Extended pilot of data entry to the ECIS platform on breast, cervical, and colorectal cancers | A preliminary review of the barriers to data availability will be conducted. Capitalising on the experience of the ongoing pilot project for development of an EU screening information system as part of the CanScreen-ECIS, assistance with training and capacity building (using the modules developed within the pilot project) will be provided to collect and review the data and identify roadmaps to improve data quality and completeness. Approaches to ECIS data entry will be piloted using individual-level data for data sharing models and tools developed in Task 5.4. Data collection procedures involving analysis of individual-level data will be piloted in exemplary countries volunteering to test this approach. Based on the activities performed in task 5.4, this task will assess the feasibility of sharing in the central database of the CanScreen-ECIS web portal data from local standardised individual databases automatically aggregated in a standard format file, by using software locally provided by the project team. This approach would allow obtaining aggregated data stratified by the large set of dimensions (smaller age groups, education level, income, SES, risk level, and per-year classes). These dimensions of potential interest and inequity were identified as relevant in the ongoing CanScreen ECIS pilot. This task will be led by CPO, Italy. | LU ISPRO, UZIS, OIL, SCI, DoH IE, MoH SK, PHC, TAI, MOH CY CPO, CSF, IACS, NCI, FISABIO, NIJZ, NOI, BRUPREV, CvKO, BCR, CCRef, IMIM, LSMUKK, BIOISTEMAK, UMIT TIROL |
| T5.4 | Implementing data collection with open-source software and standardised data model for screening to produce key quality and performance indicators | European standard for screening data format, that can be used for monitoring, federated learning and data sharing, and tools for efficient and user-friendly use of screening data will be developed. This task will consist of activities organised within the following subtasks: 5.4.1. Development of a data format, compatible with existing electronic health record data models, that standardizes data for existing, new and riskbased screening programs. This builds upon earlier experience (ECIS) on data sharing and availability issues and on knowledge acquired from the survey conducted in 5.2. 5.4.2. Development of R-package with user-friendly functionalities to report gold-standard European indicators, as developed in CanScreen-ECIS and task 5.3. 5.4.3. Integration with a dashboard solution that enables visualisation of the indicators This task will be led by CSF, Finland. | LU THL, TAI, NKIP, OIL MoH SK, PHC CSF, CPO, SPKC, EMC, RCC, VULSK, HDH, OUS, BIPS, IACS, FISABIO, DYPEDE, NOI, IU NAMSU, NCI, DOHI, LSMUKK, BIOISTEMAK MSB |
| T5.5 | Piloting developed standardised data model for European Health Data Space (EHDS) | To facilitate monitoring of the screening programs, based on the methodology developed in the HealthData@EU pilot project, the following activities will be conducted: (1) evaluation of data governance models required for the monitoring of the screening programs will be aligned with the EHDS governance; (2) software and data models developed in 5.4 will be checked for compatibility; (3) Methodology of the HealthData@EU Pilot project for the use cases will be checked and applied to the current project; and (4) use of EHDS based data will be piloted for cancer screening to generate a set of monitoring indicators. This task will be led by CSF, Finland and co-led by IACS, Spain. | LU THL, OIL, SCI CSF , IACS CPO, NCI, BRUPREV, CvKO, BCR, CCRef HDH , FISABIO, IU NAMSU, BIOISTEMAK, UMIT TIROL |
| Task Nr | Task Name | Description | Participants | Role | In-kind Contributions/Subcontracting |
| T5.1 | Ethical, Legal and Social Implications (ELSI) assessment of data sharing | ELSI assessment of data sharing will be conducted focusing on three levels: (1) individual (patient) level, specifically on the use of next-generation sequencing (NGS), which presents challenges for securing truly informed consent and honouring patient preferences for the many different types of genetic information potentially yielded by NGS); (2) institutional level represented by various stakeholders (e.g. professional organisations in genetics and oncology, test laboratories, clinical trials networks) with vested interests in deciding which types of sequencing results to analyse and return to patients or research participants, and how to manage clinical implications; and (3) societal level, e.g. questions of resource allocation and priority setting. This task will be led by DYPEDE, Greece. | LU ISPRO, PHC DYPEDE OUS, CSF, AUSLRE, LSMUKK, IACS, ISS, IRFMN | COO BEN AE | Yes (subcontracting) |
| T5.2 | Assessment of data availability and exchange-related issues focusing also on new and riskbased screening programs | A survey will be conducted to assess which data are available for the indicators on quality of cancer screening process and dimensions of population sub-group or stratified analyses. The survey results will provide useful information to plan the data collection for the third screening report within the ECIS (CanScreen platform) highlighting areas and directions for improving monitoring efforts in European countries. Information about coding systems and data structure will be collected, which will provide relevant input to the activities planned in tasks 5.4 and 5.5 aimed to transform data contained within local databases into a common format (data model) and to define a common representation (terminologies, vocabularies, coding schemes), in order to perform analyses using standard analytic routines. This task will be led by CPO, Italy, co-led by CSF, Finland. | LU THL, ISPRO, UZIS, NKIP TAI, MOH CY CPO, CSF BIPS, IACS, Fisabio, NCI, DYPEDE, NNGYK, IU NAMSU | COO BEN AE | No |
| T5.3 | Extended pilot of data entry to the ECIS platform on breast, cervical, and colorectal cancers | A preliminary review of the barriers to data availability will be conducted. Capitalising on the experience of the ongoing pilot project for development of an EU screening information system as part of the CanScreen-ECIS, assistance with training and capacity building (using the modules developed within the pilot project) will be provided to collect and review the data and identify roadmaps to improve data quality and completeness. Approaches to ECIS data entry will be piloted using individual-level data for data sharing models and tools developed in Task 5.4. Data collection procedures involving analysis of individual-level data will be piloted in exemplary countries volunteering to test this approach. Based on the activities performed in task 5.4, this task will assess the feasibility of sharing in the central database of the CanScreen-ECIS web portal data from local standardised individual databases automatically aggregated in a standard format file, by using software locally provided by the project team. This approach would allow obtaining aggregated data stratified by the large set of dimensions (smaller age groups, education level, income, SES, risk level, and per-year classes). These dimensions of potential interest and inequity were identified as relevant in the ongoing CanScreen ECIS pilot. This task will be led by CPO, Italy. | LU ISPRO, UZIS, OIL, SCI, DoH IE, MoH SK, PHC, TAI, MOH CY CPO, CSF, IACS, NCI, FISABIO, NIJZ, NOI, BRUPREV, CvKO, BCR, CCRef, IMIM, LSMUKK, BIOISTEMAK, UMIT TIROL | COO BEN AE | Yes (subcontracting) |
| T5.4 | Implementing data collection with open-source software and standardised data model for screening to produce key quality and performance indicators | European standard for screening data format, that can be used for monitoring, federated learning and data sharing, and tools for efficient and user-friendly use of screening data will be developed. This task will consist of activities organised within the following subtasks: 5.4.1. Development of a data format, compatible with existing electronic health record data models, that standardizes data for existing, new and riskbased screening programs. This builds upon earlier experience (ECIS) on data sharing and availability issues and on knowledge acquired from the survey conducted in 5.2. 5.4.2. Development of R-package with user-friendly functionalities to report gold-standard European indicators, as developed in CanScreen-ECIS and task 5.3. 5.4.3. Integration with a dashboard solution that enables visualisation of the indicators This task will be led by CSF, Finland. | LU THL, TAI, NKIP, OIL MoH SK, PHC CSF, CPO, SPKC, EMC, RCC, VULSK, HDH, OUS, BIPS, IACS, FISABIO, DYPEDE, NOI, IU NAMSU, NCI, DOHI, LSMUKK, BIOISTEMAK MSB | COO BEN AE AP | No |
| T5.5 | Piloting developed standardised data model for European Health Data Space (EHDS) | To facilitate monitoring of the screening programs, based on the methodology developed in the HealthData@EU pilot project, the following activities will be conducted: (1) evaluation of data governance models required for the monitoring of the screening programs will be aligned with the EHDS governance; (2) software and data models developed in 5.4 will be checked for compatibility; (3) Methodology of the HealthData@EU Pilot project for the use cases will be checked and applied to the current project; and (4) use of EHDS based data will be piloted for cancer screening to generate a set of monitoring indicators. This task will be led by CSF, Finland and co-led by IACS, Spain. | LU THL, OIL, SCI CSF , IACS CPO, NCI, BRUPREV, CvKO, BCR, CCRef HDH , FISABIO, IU NAMSU, BIOISTEMAK, UMIT TIROL | COO BEN AE | No |
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Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor HADEA can be held responsible for them.
The general objective of EUCanScreen is to assure sustainable implementation of high-quality screening for breast, cervical and colorectal cancers, as well as implementation of the recently recommended screening programs – for lung, prostate and gastric cancers. EUCanScreen will facilitate the reduction of cancer burden and achieving equity across the EU.
This project has received funding from the European Union’s EU4HEALTH Programme under the Grant Agreement no 101162959
