Pandemic influenza control in Europe and the constraints resulting from incoherent public health laws

© 2010 Martin et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.Background: With the emergence of influenza H1N1v the world is facing its first 21st century global pandemic. Severe Acute Respiratory Syndrome (SARS) and avian influenza H5N1 prompted development of pandemic preparedness plans. National systems of public health law are essential for public health stewardship and for the implementation of public health policy[1]. International coherence will contribute to effective regional and global responses. However little research has been undertaken on how law works as a tool for disease control in Europe. With co-funding from the European Union, we investigated the extent to which laws across Europe support or constrain pandemic preparedness planning, and whether national differences are likely to constrain control efforts. Methods: We undertook a survey of national public health laws across 32 European states using a questionnaire designed around a disease scenario based on pandemic influenza. Questionnaire results were reviewed in workshops, analysing how differences between national laws might support or hinder regional responses to pandemic influenza. Respondents examined the impact of national laws on the movements of information, goods, services and people across borders in a time of pandemic, the capacity for surveillance, case detection, case management and community control, the deployment of strategies of prevention, containment, mitigation and recovery and the identification of commonalities and disconnects across states. Results: Results of this study show differences across Europe in the extent to which national pandemic policy and pandemic plans have been integrated with public health laws. We found significant differences in legislation and in the legitimacy of strategic plans. States differ in the range and the nature of intervention measures authorized by law, the extent to which borders could be closed to movement of persons and goods during a pandemic, and access to healthcare of non-resident persons. Some states propose use of emergency powers that might potentially override human rights protections while other states propose to limit interventions to those authorized by public health laws. Conclusion: These differences could create problems for European strategies if an evolving influenza pandemic results in more serious public health challenges or, indeed, if a novel disease other than influenza emerges with pandemic potential. There is insufficient understanding across Europe of the role and importance of law in pandemic planning. States need to build capacity in public health law to support disease prevention and control policies. Our research suggests that states would welcome further guidance from the EU on management of a pandemic, and guidance to assist in greater commonality of legal approaches across states.Peer reviewe

The COMPARE Data Hubs

Data sharing enables research communities to exchange findings and build upon the knowledge that arises from their discoveries. Areas of public and animal health as well as food safety would benefit from rapid data sharing when it comes to emergencies. However, ethical, regulatory and institutional challenges, as well as lack of suitable platforms which provide an infrastructure for data sharing in structured formats, often lead to data not being shared or at most shared in form of supplementary materials in journal publications. Here, we describe an informatics platform that includes workflows for structured data storage, managing and pre-publication sharing of pathogen sequencing data and its analysis interpretations with relevant stakeholders

The Prospective Dutch Colorectal Cancer (PLCRC) cohort: real-world data facilitating research and clinical care

Real-world data (RWD) sources are important to advance clinical oncology research and evaluate treatments in daily practice. Since 2013, the Prospective Dutch Colorectal Cancer (PLCRC) cohort, linked to the Netherlands Cancer Registry, serves as an infrastructure for scientific research collecting additional patient-reported outcomes (PRO) and biospecimens. Here we report on cohort developments and investigate to what extent PLCRC reflects the “real-world”. Clinical and demographic characteristics of PLCRC participants were compared with the general Dutch CRC population (n = 74,692, Dutch-ref). To study representativeness, standardized differences between PLCRC and Dutch-ref were calculated, and logistic regression models were evaluated on their ability to distinguish cohort participants from the Dutch-ref (AU-ROC 0.5 = preferred, implying participation independent of patient characteristics). Stratified analyses by stage and time-period (2013–2016 and 2017–Aug 2019) were performed to study the evolution towards RWD. In August 2019, 5744 patients were enrolled. Enrollment increased steeply, from 129 participants (1 hospital) in 2013 to 2136 (50 of 75 Dutch hospitals) in 2018. Low AU-ROC (0.65, 95% CI: 0.64–0.65) indicates limited ability to distinguish cohort participants from the Dutch-ref. Characteristics that remained imbalanced in the period 2017–Aug’19 compared with the Dutch-ref were age (65.0 years in PLCRC, 69.3 in the Dutch-ref) and tumor stage (40% stage-III in PLCRC, 30% in the Dutch-ref). PLCRC approaches to represent the Dutch CRC population and will ultimately meet the current demand for high-quality RWD. Efforts are ongoing to improve multidisciplinary recruitment which will further enhance PLCRC’s representativeness and its contribution to a learning healthcare system

Improving laboratory-based surveillance of infectious diseases in the Netherlands

In the Netherlands, there are special laboratories that test whether people have an infectious disease. The analysis of how many people become ill and by which variant of a virus or bacterium is known as laboratory-based surveillance of infectious diseases. RIVM performs this analysis in cooperation with these ‘medical-microbiological laboratories’ and with the Municipal Public Health Services. During the coronavirus pandemic, it became increasingly clear that laboratories, including those of RIVM, must be able to test for infectious diseases on a large scale. They must also be able to see which variants of a pathogen are involved, such as the Delta and Omicron variants of the SARS-CoV-2 virus. In addition, it must be possible to exchange laboratory data with RIVM safely and efficiently, so that RIVM can monitor how a pandemic is progressing in the Netherlands. For infectious diseases other than COVID-19, it is equally important that RIVM is able to monitor how they are evolving through laboratory tests. Currently, different technical systems are used for different diseases. Some of these systems are outdated. To better cope with a possible new epidemic, RIVM will set up a new technical platform for laboratory-based surveillance. This means that the surveillance of various infectious diseases can be technically supported in the same way, both during data storage and data analysis. This will also make it possible to exchange data in the same way, which is more efficient and clearer for all laboratories concerned. Furthermore, the platform will be better able to process large amounts of test results and make it easy to store and analyse data about new pathogens. In preparation for this improvement, RIVM has described the legal context for the exchange of data, such as data privacy legislation. It has also described the first full version of the technical specifications and functionalities that the platform must meet. RIVM will develop and refine the most important components of the platform as from 2023. In order to develop the platform as carefully as possible, its individual components will be tackled one by one. This way, RIVM can learn from each experience. This approach will be beneficial for both the quality and cost of the ultimate platform

Verbetering van het toezicht op infectieziekten op basis van laboratoriumonderzoek

In the Netherlands, there are special laboratories that test whether people have an infectious disease. The analysis of how many people become ill and by which variant of a virus or bacterium is known as laboratory-based surveillance of infectious diseases. RIVM performs this analysis in cooperation with these ‘medical-microbiological laboratories’ and with the Municipal Public Health Services. During the coronavirus pandemic, it became increasingly clear that laboratories, including those of RIVM, must be able to test for infectious diseases on a large scale. They must also be able to see which variants of a pathogen are involved, such as the Delta and Omicron variants of the SARS-CoV-2 virus. In addition, it must be possible to exchange laboratory data with RIVM safely and efficiently, so that RIVM can monitor how a pandemic is progressing in the Netherlands. For infectious diseases other than COVID-19, it is equally important that RIVM is able to monitor how they are evolving through laboratory tests. Currently, different technical systems are used for different diseases. Some of these systems are outdated. To better cope with a possible new epidemic, RIVM will set up a new technical platform for laboratory-based surveillance. This means that the surveillance of various infectious diseases can be technically supported in the same way, both during data storage and data analysis. This will also make it possible to exchange data in the same way, which is more efficient and clearer for all laboratories concerned. Furthermore, the platform will be better able to process large amounts of test results and make it easy to store and analyse data about new pathogens. In preparation for this improvement, RIVM has described the legal context for the exchange of data, such as data privacy legislation. It has also described the first full version of the technical specifications and functionalities that the platform must meet. RIVM will develop and refine the most important components of the platform as from 2023. In order to develop the platform as carefully as possible, its individual components will be tackled one by one. This way, RIVM can learn from each experience. This approach will be beneficial for both the quality and cost of the ultimate platform