Death From Lack Of Data

Posted by
Dr. Andrea Ammon, Director of ECDC

No single country is ready to fight alone a pandemic like COVID-19. To win, accurate data regarding the outbreak, the epidemiological situation and long-term trends are essential. Without them, decisions remain chaotic, actions – ineffective. Strengthening Europe’s defenses against infectious diseases is the aim of the European Centre for Disease Prevention and Control (ECDC) established 17 years ago. Many people ask today what the ECDC has done to protect the European citizens. I referred this question to Dr. Andrea Ammon, Director of ECDC.

In 2019, before the COVID-19 pandemic, I asked you how ECDC is using health data to improve epidemiological surveillance? What has changed in the last year?

Early February 2020, ECDC provided the Member States with reporting protocols for COVID-19 data, including laboratory data. This data was used for daily updates and weekly country reports. Very importantly, we used the data as a basis for all Rapid Risk Assessments. In accordance with the Council Recommendation on a coordinated approach to the restriction of free movement in response to the COVID-19 pandemic, which was adopted by the EU Member States on 13 October 2020 and amended on 28 January 2021, this data are used to produce the weekly updated maps on which Member States base decisions regarding travel restrictions.

Since January 2021, ECDC is also collecting data on the vaccine rollout, the number of doses delivered to countries, and the vaccine uptake overall and in certain target groups. These data are displayed in the Vaccine Tracker on the ECDC website and in weekly reports.

How precise can we monitor the epidemiological situation, and what must be improved to make this surveillance more accurate? What data are missing that would help better defeat infectious diseases in Europe? What are the lessons learned from the pandemic regarding data management and coordination among EU countries?

Three aspects need to be improved in the future: the timeliness, the completeness of the reporting and the comparability of the collected data in the Member States.

Many improvements are already planned or underway. ECDC collects epidemiological data on 58 infectious diseases across Europe. The bulk of the data is actively submitted by the MS on a weekly, monthly or annual basis, depending on the disease through the ECDC surveillance system.

For COVID-19, the data collection is weekly. What we have seen is that the transmission of the data from the place where it is generated – GP, hospital, or laboratory – through the local, regional and national authorities until it reaches the EU level still requires a lot of human intervention. For example, putting the data in the right format and sometimes even including paper notifications at the subnational level. It is also time-consuming and resource-intensive.

Also, machine-to-machine transmission requires adaptation of the systems on the MS side. This is where major investments are needed in infrastructure and improved technology. The system is still being improved in terms of capacity and technology. We are launching an upgraded system called EpiPulse this year which will be further expanded in 2022. We are currently exploring the use for EU surveillance purposes of information from electronic health records (which contain patient’s medical history, diagnoses, medications, treatment plans, immunization dates, allergies, radiology images, and laboratory and test results). ECDC is launching a proof-of-concept study on the use of EHR for severe acute respiratory infections (such as COVID) in 2021.

For the other part of EU Surveillance, event-based surveillance, ECDC performs internet-based epidemic intelligence screening for global monitoring of infectious diseases. An agreement at the EU level on the data formats and semantics used for publication of those data on national websites, such as proposed by the E-Health network, would facilitate the process.

Also, through epidemic intelligence, thousands of web pages are screened daily for the detection of public health threats worldwide through the use of web-aggregators (e.g., GPHIN, EIOS, MediSys, HealthMap) and automated tools for signal detection. AI would allow automation of the processes (such as data collection, filtering, validation, and analysis) and improving the timeliness and sensitivity in detecting signals.

Another example that is already a reality is Epitweetr, a free, open-source, R-based tool recently developed by ECDC that supports the automatic monitoring of Twitter messages for the early detection of potential public health threats.

We have seen that sampling and testing strategies have affected the comparability of the EU surveillance data. Here, the Commission proposal for strengthening ECDC’s mandate is proposing a more standardized approach.

Before all this can become a reality, data generation needs to be expanded and sharing between actors and sectors made more rapid.

What does ECDC plan to strengthen the preparedness for cross-border health threats and get ready for the next pandemic?

The legal proposal of the Commission on strengthening the mandate of ECDC and the proposal for a new Regulation on Serious cross-border threats to health as part of the package for a Health Union contain a number of concrete elements that address the lessons learned during this pandemic. While these proposals are still under discussion and consultation, ECDC will support the Member States in their after/in-action reviews and has started developing with them meaningful indicators to allow a realistic assessment of the state of preparedness.

Many countries have implemented COVID-19 tracking apps to help citizens in accessing infection risk. How do you evaluate such initiatives?

ECDC has published guidance on such apps on 10 June 2020. Here a short summary of the guidance: Mobile applications (apps) can help trace and alert more contacts as they do not rely on the memory of the infected case. Apps can also trace contacts unknown to the case, notify contacts quickly, and facilitate cross-border contact tracing. Mobile apps can complement but never replace regular contact tracing efforts. Not everyone will have a smartphone, in particular the elderly, and not everyone will have downloaded the tracing app. It is also paramount that such apps are embedded in the systematic testing and quarantining of contact persons.

The use of mobile apps should be voluntary. Their contribution to controlling efforts depends on the proportion of the population that uses them (the more people download them, the better). It is equally important that the apps work across borders.

The Commission has established the European Federation Gateway Service that allows countries to register their apps so that they also work in other EU countries. Public health authorities should be involved in all stages of the selection, development, piloting, rollout, and evaluation of apps to ensure that they protect public health in the best way with due consideration to privacy and data protection.

In the shadow of COVID-19, there are many other healthcare challenges in Europe. Which of them will be on the agenda in the upcoming years?

I will comment here only on other infectious diseases as per the ECDC mandate. In principle, the attention to most of the other infectious diseases has been diverted to COVID. For some diseases, the measures put in place for COVID also reduced the frequency of these diseases, e.g., we did see very little of influenza last winter. For others, regular programs were reduced or disrupted.  We are particularly concerned about AMR and possible gaps in the national immunization programs. Despite the large focus on COVID, we have been and are aware of outbreaks of multi-resistant bacteria – this area will need strengthened attention. The gaps in immunization programmes depend on how much the national routine immunizations have been disrupted. Here, careful analysis and, if necessary, catch-up campaigns will need to be set up.

An example of COVID-19 pandemic map by ECDC

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