This is the second in a two-part series. Read part one.
The link between clinical and social aspects of COVID-19 raises the question of what type of data are needed to manage the COVID-19 surge and better absorb shocks that may be caused by future pandemics.
We believe clinical patient level data are essential given the different ways the disease has developed for different patients. There are many questions up in the air that need to be answered in order to prepare better for future pandemics and to treat the disease.
If testing and analysis is done in a harmonised way across the EU countries, data from different tests can be compared. And if these data are combined with demographic, social, health and other relevant characteristics it will bring additional value by understanding the framework for the disease and perhaps also indicate a more efficient treatment through personalisation.
This will require a number of things:
- Developing testing in a diagnostic context linking patient data, such as registries, to additional sources of data to be able to follow up the development of the disease in the medium- and long-terms.
- Establishing a common framework that allows for meaningful comparison across borders – from health system to health system. If it cannot be done quickly enough at a global level, it should be possible to do it at a European level.
- Establishing common ways of interpreting data (preferably through a harmonised approach at EU level) in order to maximize the value of the treatment for the patient, for the health systems, and for our societies.
A communication published by the European Commission in July identified EU-wide sharing of clinical, epidemiological, virological data through an EU COVID-19 data sharing platform as one of action areas to ensure the short-term EU health preparedness for COVID-19 outbreak)
A controversial part of the proposal is the issue of data security and the broad scepticism that exists in our populations and amongst various groups of stakeholders involved in guarding the integrity of citizens. But quite a number of types of data are already taken into account in countries with a high degree of digitalisation, which has led to conclusions about the use of linked datasets and therefore has helped in combating the disease.
However, the approaches are not comparable and differ from country to country and therefore have limited use. The pandemic in itself may now provide a strong argument for a more comprehensive use of data. By increasing knowledge about the disease, we will unlock benefits for patients, for health professionals, and for our societies.