Big Data For Epidemiology

How to control and prevent diseases efficiently by introducing new technologies like Big Data? At the European Health Forum Gastein, I interviewed Dr Andrea Ammon, Director of the European Centre for Disease Prevention and Control (ECDC).

How can Big Data help us to control and prevent diseases in a more effective way?

Big Data can ultimately lead to stronger evidence at the EU level on disease burden, temporal and geographic trends, and on the risk posed by emerging threats. This can, in return, guide coordinated preparedness, preventions and control strategies at EU and national level. The availability of timely and accurate data on certain diseases would allow ECDC to detect dispersed cross-border outbreaks that cannot be identified at the national level, thus generating evidence for informing appropriate control strategies.

I would like to mention in this context that the use of whole-genome sequencing (WGS) is critical to understand disease pathogens. We are talking about a single technology that adds so much value to public health by allowing outbreak detection, guiding treatment and prevention choices, predicting disease evolution, severity patterns, and even the emergence of new strains.

Besides, the information coming from social media can also be used to some extent for purposes related to disease prevention. For example, in the field of vaccination, outbreak investigation, acceptance of public health interventions, etc. More research is needed in this specific field.

How ECDC is already using health data to improve health surveillance, and what initiatives are planned to engage new data sets and technologies?

Most disease prevention and control strategies are guided by burdensome notification systems and ad-hoc epidemiological studies. Transitioning to digital epidemiology requires new mind-sets, but even stronger attention to epidemiological methods and standards for information storage. Also, privacy and data protection issues need to be addressed and clarified.

At the ECDC, we are closely following the scaling up of the digitalisation of health information, knowing that this will ultimately result in more data of better quality 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), e-health, Big Data, and social media for surveillance.

In the past years, ECDC has been particularly active in fostering Member States collaborations 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, 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 aim at gaining 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 more performant, less burdensome and more cost-effective surveillance systems, based on the automatic use of routinely available data.

Is there a long-term ECDC strategy for enabling Big Data for healthcare analysis and interventions?

Except for the projects I have already mentioned, let me also add that we aim to work closely with some countries to develop and apply technical and epidemiological protocols for addressing some critical public health surveillance questions through data linkage and analysis of existing national or regional health data.

Through this exercise, we aim to learn in detail the main technical, legal, and epidemiological challenges that need to be addressed before such an approach can be used for complementing or replacing ongoing routine surveillance.

It is important also to work towards reaching an EU-level consensus on the implications and opportunities of the GDPR for public health.

Access to data gives us new knowledge. How to translate it into behavioural change and actions?

ECDC’s role as a scientific EU agency is to convert data into compelling evidence on how to address the key public health issues that the EU is facing. The more knowledge we have, the better we can inform political and financial choices at EU and national level for the effective control of infectious diseases.

In terms of behavioural sciences, addressing specific behaviours requires also looking at the new technologies with a view of using new communication channels and languages. This means merely new opportunities for disseminating prevention messages. Some European countries are already in the process of using electronic health data for surveillance purposes. Their experience has shown many potential benefits. Joining efforts with 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. To ensure health for all, we need sound scientific evidence from public health surveillance, applied epidemiological studies, and clinical research and turn this into easily accessible and digestible information for those who advise policy and decision-makers at EU or national level.

As a first step, we need to establish a stronger communication line between public health and e-health authorities. We need to understand and describe each other’s requirements better and find solutions to seemingly conflicting interests at the individual level (data protection) and at the population level (access to Big Data for epidemiological analyses to better target health policy efforts). ECDC is ready to make an initial investment to carry it out.

Smartphones and wearables know more and more about us: how we sleep, what we eat, about our social life and unhealthy habits. Is it justified to use this data to deliver personalised preventive programs?

I mentioned before that the transition to digital epidemiology requires new mind-sets, but I would like to stress that privacy and data protection issues are essential for the EU. Citizens should be assured that their data are used in a transparent, safe and meaningful way. It is necessary to build trust in the scientific community. The GDPR offers a great framework to achieve this goal.

Let me also add that this transition to the routine use of electronic health information and contextual data, such as environmental and behavioural disease determinants data, will transform the job and competences of public health professionals while making most of the current surveillance systems obsolete.

What to do to avoid one of the biggest dangers in modern healthcare, viz upgrading the health of those who are healthy instead of helping neglected groups that need support?

In the EU, there are excellent public healthcare services. In this context, technologies can be used to reach those hard-to-reach groups within our societies, rather than excluding them. This is particularly relevant for prevention programmes such as delivering vaccinations.

The European Commission is already providing funds for structural development in this area in the countries.

We at ECDC are dedicated to working towards reducing the inequities between the countries. 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 critical public health functions are taken into account when developing e-health/digital health strategies and implementation plans. ECDC sees as its task to support the Member States in making the transition to adopt new technologies for improving public health.

Thank you for your time.