Population-based cancer registries (PBCRs) are advanced public health systems providing ongoing surveillance through systematic collection, analysis, interpretation, and dissemination of high-quality data on cancer incident cases registered in a defined population residing in a specific geographical area (1, 2). Basically, PBCRs are well equipped for strengthening cancer surveillance, playing a strategic role in making geographic and temporal variation comparisons to highlight cancer epidemics, while assessing the effectiveness of preventive interventions and oncological care (3). Furthermore, many PBCRs provide cancer risk communication to local communities and authorities by using valuable tools to spread epidemiological data on cancer in intelligible ways to better address preventive intervention and changes in lifestyles (4). To these ends, PBCRs link records and merge data from different administrative, demographic and health sources, following international standards, recommendations, and guidelines (5–7). Standards in cancer surveillance have been defined in Europe and several cancer research domains are continuously alimented by the cancer registries networks in support of public health and clinical research, with specific regard to aetiologic research, mass screening evaluation, quality of care, translational prognostics, and survivorship (3). More recently, progress has been documented regarding the PBCRs’ capability to estimate the effectiveness of immunisation programmes against vaccine preventable viral infections associated to cancer as well as of cancer screening programmes to decrease late-stage incidence and mortality (8–10). Much more fruits can be harvested from “RegisTrees” having strong roots (11), including the ones allowing the deterministic linkage between cancer registries and clinical registries to generate real-world evidence on treatments, particularly on elderly patients as well, a target population that is usually not included in clinical trials (12, 13). However, the latest revision of the European Union (EU) data protection framework and of the General Data Protection Regulation (GDPR), while suggesting a harmonization of health registries requirements for confidentiality and individual consent to data processing, made it raise concerns from researchers and epidemiologists experiencing some excessive restrictions that may hamper data linkages between cancer registries and other sources (14–16). As documented by a survey on how GDPR could have impacted the running of the daily activities of the cancer registries in different EU countries, conducted in 2018 by the European network of cancer registries (ENCR), some critical points related to the implementation and interpretation of the GDPR emerged from PBCRs (17, 18). Of interest, in 2017 the European Commission adopted a strategy to implement an interoperability framework, in order to improve “the ability of organizations to interact towards mutually beneficial goals, involving the sharing of information and knowledge by means of the exchange of data between the respective ICT systems” (19). As the digital interoperability was conceived to maximize the use of huge amounts of data, by contrast an unnecessarily strict interpretation of EU data protection regulation may lead to missed data linkages in cancer registration and other epidemiological activities (20). Therefore, the nature and the use of data from cancer registries in public health and research purposes, and their potentialities in the age of health digital interoperability, are herein discussed (16).

Cancer registries and data protection in the age of health digital interoperability in Europe: The perspective of the Italian Network of Cancer Registries (AIRTUM)

Vitarelli, Susanna;
2022-01-01

Abstract

Population-based cancer registries (PBCRs) are advanced public health systems providing ongoing surveillance through systematic collection, analysis, interpretation, and dissemination of high-quality data on cancer incident cases registered in a defined population residing in a specific geographical area (1, 2). Basically, PBCRs are well equipped for strengthening cancer surveillance, playing a strategic role in making geographic and temporal variation comparisons to highlight cancer epidemics, while assessing the effectiveness of preventive interventions and oncological care (3). Furthermore, many PBCRs provide cancer risk communication to local communities and authorities by using valuable tools to spread epidemiological data on cancer in intelligible ways to better address preventive intervention and changes in lifestyles (4). To these ends, PBCRs link records and merge data from different administrative, demographic and health sources, following international standards, recommendations, and guidelines (5–7). Standards in cancer surveillance have been defined in Europe and several cancer research domains are continuously alimented by the cancer registries networks in support of public health and clinical research, with specific regard to aetiologic research, mass screening evaluation, quality of care, translational prognostics, and survivorship (3). More recently, progress has been documented regarding the PBCRs’ capability to estimate the effectiveness of immunisation programmes against vaccine preventable viral infections associated to cancer as well as of cancer screening programmes to decrease late-stage incidence and mortality (8–10). Much more fruits can be harvested from “RegisTrees” having strong roots (11), including the ones allowing the deterministic linkage between cancer registries and clinical registries to generate real-world evidence on treatments, particularly on elderly patients as well, a target population that is usually not included in clinical trials (12, 13). However, the latest revision of the European Union (EU) data protection framework and of the General Data Protection Regulation (GDPR), while suggesting a harmonization of health registries requirements for confidentiality and individual consent to data processing, made it raise concerns from researchers and epidemiologists experiencing some excessive restrictions that may hamper data linkages between cancer registries and other sources (14–16). As documented by a survey on how GDPR could have impacted the running of the daily activities of the cancer registries in different EU countries, conducted in 2018 by the European network of cancer registries (ENCR), some critical points related to the implementation and interpretation of the GDPR emerged from PBCRs (17, 18). Of interest, in 2017 the European Commission adopted a strategy to implement an interoperability framework, in order to improve “the ability of organizations to interact towards mutually beneficial goals, involving the sharing of information and knowledge by means of the exchange of data between the respective ICT systems” (19). As the digital interoperability was conceived to maximize the use of huge amounts of data, by contrast an unnecessarily strict interpretation of EU data protection regulation may lead to missed data linkages in cancer registration and other epidemiological activities (20). Therefore, the nature and the use of data from cancer registries in public health and research purposes, and their potentialities in the age of health digital interoperability, are herein discussed (16).
2022
262
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Utilizza questo identificativo per citare o creare un link a questo documento: https://hdl.handle.net/11581/468682
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