Data – in the environment around us, on our travels, on the food we eat, on the diseases we catch, on the medicines we take, on the genes we inherit – is likely to be stored somewhere and made available for analysis.
Yet, most disease prevention and control strategies are guided by burdensome notification systems and ad-hoc epidemiological studies.
Transitioning to digital epidemiology requires new mindsets but an even stronger attention to epidemiological methods and standards for information storage. In addition, privacy and data protection issues need to be addressed and clarified.
This transition to the routine use of electronic health information and contextual data, such as environmental and behavioural disease determinants data, will transform the work and competences of public health professionals.
It will also make the most of the current surveillance systems obsolete. The ongoing scaling up of digitalisation in the health sector will lead to more data being available for infectious disease surveillance, data of better quality and shared with less effort.
This means that we will gradually move from disease surveillance systems based on notifications by healthcare professionals to systems that make direct use of healthcare data.
The change will require a profound understanding of the electronic healthcare information systems in use as well as addressing all concerns related to data protections issues and solutions.
For this transition to be successful, concerted strategies need to be developed involving the political, commercial, public health and societal actors.
The Connecting Europe Facility programme and Horizon 2020 support infrastructure development and innovative tools for data handling and analysis.
An eHealth network has been set up with representatives from EU Member States to facilitate the cross-border exchange of patient summaries and electronic prescriptions, among other initiatives.
The Commission’s Digital Single Market (DSM) strategy has driven several initiatives in building capacities and infrastructures for ensuring access to relevant health data, personalised medicine and best healthcare practices across Europe.
More recently, the European Commission published a Communication on Digital Transformation of Health and Care in the Digital Single Market, empowering citizens and building a healthier society. These policy documents give direction to EU activities in this field for the coming years.
“For this transition to be successful, concerted strategies need to be developed”
At the European Centre for Disease Prevention and Control (ECDC), we are closely following the scaling up of the digitisation of health information, knowing that this will ultimately result in more data, of better quality and with less effort, for infectious disease surveillance.
It is for this reason, that one of seven priorities I set up for 2020 is to gradually assess and integrate innovative technological and scientific advances to routine work and in particular, the use of whole genome sequencing (WGS), eHealth, big data, and social media for surveillance.
In the past years, the ECDC has been particularly active in fostering member state collaboration over the use of electronic immunisation registries for vaccine programme monitoring and in exploiting WGS data for investigating outbreaks and for assessing emerging threats.
Several studies have shown the feasibility and validity of linking existing health data sources for generating relevant indicators for informing disease prevention and control programmes.
In 2019/2020, the ECDC will work on two studies to pilot surveillance of pan-drug-resistant bacteria (PDR) and to perform risk factors analyses of selected notifiable diseases, using data directly from electronic healthcare sources.
These studies seek to gain an in-depth knowledge on what requirements are needed to perform better quality EU disease surveillance using electronic healthcare data and which barriers have to be overcome.
In the future, we need better performing, less burdensome and more cost-effective surveillance systems, based on the automatic use of routine healthcare data.
“We need to establish a stronger communication line between public health and e-health authorities”
Some European countries are already in the process of using electronic health data for surveillance purposes. Their experience has shown numerous potential benefits.
Joining efforts with the ECDC will provide opportunities for further developing existing systems and for generating knowledge and critical evidence that would serve the public health information needs of other countries in an efficient manner.
In order to ensure health for all, we need sound scientific evidence from public health surveillance, applied epidemiological studies, and clinical research.
As a first step, we need to establish a stronger line of communication between public health and e-health authorities.
We need to understand and describe each other’s requirements better and find solutions to seemingly opposite interests at individual level (data protection) and at population level (access to big data for epidemiological analyses to better target health policy efforts).
The ECDC is ready to do an initial investment to make this happen. We are also dedicated to working to reducing the inequities between countries.
Failing to do so will not stop the eventual evolution of public health but the price to pay will be much higher, particularly for countries with fewer resources.
The ECDC’s objective in this area is to close existing knowledge gaps, find solutions for legal, ethical and privacy concerns and ensure that the needs of key public health functions are taken into account when developing eHealth/digital health strategies and implementation plans.
The ECDC sees as its task supporting Member States in making the transition to adopt new technologies for improving public health.
At this year’s European Health Forum Gastein, the ECDC’s session on the opportunities and challenges of Big Data meeting epidemiology aims to explore these remaining gaps and to identify some of the public health requirements that need to be included in eHealth policies for implementation at national and European Union level.