Health data and the pandemic: the time for real-world data

  Big data

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Teresa Bau
Researchers from the eHealth Center have contributed to a book on the technological changes brought about by Covid-19

The COVID-19 pandemic has irrevocably changed the world of health data. The crisis has put the spotlight on the importance of science and knowledge sharing in facing today's challenges. In this context, researchers at the Universitat Oberta de Catalunya's (UOC) eHealth Center have shared their expertise in the recently published book ¿Poltica confinada? Nuevas tecnologas y toma de decisiones en un contexto de pandemia (Lockdown politics? New technologies and decision-making in a pandemic) (Aranzadi), in which experts from different disciplines have analysed the role of new technologies in the context of the current pandemic.

The eHealth Center's director, Albert Barber, and two of the its researchers, Manuel Armayones and Noem Robles, wrote the chapter "Datos de salud: desde la decisin poltica hasta la salud del ciudadano" (Health data: from political decision to citizen health), which describes how health data are being used in the context of COVID-19 and the possibilities they offer for managing the pandemic.

The need for quality, comparable data

When the World Health Organization (WHO) declared last March that the COVID-19 outbreak had become a pandemic, the Spanish Government set up a universal reporting system that would be used by the autonomous regions to send information every day to the Ministry of Health. With this system the regions have been able to send data on new positive cases, infected health personnel, hospitalizations, ICU beds occupied, deaths or hospital discharges, among other data. "So serious was the pandemic that technological and legal interoperability barriers were quickly overcome and governments at different levels were given resources to track in real time the course followed by the epidemic, enabling them to channel resources to the different needs, as they were detected," the eHealth Center's experts explained.

According to Barber, "the pandemic has shown the importance of sharing data: it allows us to get real information about what is happening and make evidence-based policy decisions. In general, it has given added visibility to the need for open, collaborative, cross-cutting, transdisciplinary science." At the same time, faced with this new scenario, "we need a new social contract that establishes in what conditions we process citizens' data while ensuring compliance with ethical principles," and here, Barber assured, "the European institutions have a lot to say".

In order to work effectively with data, their quality must be guaranteed, and this means addressing two key challenges: the lack of interoperability between some systems and the fact that the same indicator from different territories does not always give equivalent information. This was seen in the death counts during the first wave of the pandemic. While some regions only reported the deaths of people who had tested positive in the PCR, other territories also included in the count people who had very likely died of the virus but had not been tested. This has caused difficulties when cross-matching, comparing and analysing the reported numbers.  To avoid this type of situation, "the data must be reliable and of good quality. All of the stakeholders must agree on what information will be provided," the eHealth Center's director explained.

In addition to the need to have access to good-quality databases, algorithms are playing an increasingly predominant role in political and other decisions. These models are able to analyse enormous volumes of data and detect patterns that are beyond the possibilities of humans. However, Barber warned, "one must be wary of the possible biases that algorithms can have, as has already been found in some cases". That is why it is very important "that these algorithms be co-created within multidisciplinary teams of professionals, for example, technologists and physicians". Armayones believed that "more transparency was needed about the algorithms that are being used to prevent the existence of black boxes, that is, artificial intelligence systems in which the results and operations performed are not visible".

The rise of real-world data

The data collected by health systems, plus the sum of data from other sources, such as mobile devices, are known as real-world data (RWD). Robles, a specialist in this field, said: "The pandemic has increased the use of RWD and has helped overcome some of the obstacles in working with them. This information has been vital for tracking the pandemic and planning resources. However, there still remain a number of technological and regulatory aspects that need to be resolved before data from several sources can be cross-matched effectively and securely. For example, cross-matching medical record data with the data obtained from monitoring apps (for COVID-19 or other diseases, such as diabetes) or even with non-health data, such as environmental data records."

Apps, a new tool to combat the pandemic

One of the digital tools currently being proposed for managing the pandemic is the mobile app. Both the Spanish Ministry of Health and the regional governments have launched several apps targeting the general public and health professionals. Used as support tools for epidemiological surveillance, these apps have been effective in lightening the load on the health system. However, implementing these strategies raises a number of challenges: a prior condition for guaranteeing their effectiveness is that enough people download and use the app. As many citizens distrust governments or large corporations, this condition is not always met.

The difficulties in using mobile apps for health or health management purposes are well known and are studied by disciplines such as behavioural design. Armayones, as an expert in this field, considered that "every time that a measure is decided that entails a change of people's behaviour, we must analyse the barriers and facilitators. Methods and theoretical models must be used to influence behaviour in an ordered manner and in accordance with scientific evidence". As the book explains, "it is essential to convince people that collaborating in the use of COVID-19 apps is as important as washing their hands or wearing a mask".

The book ¿Poltica confinada? Nuevas tecnologas y toma de decisiones en un contexto de pandemia (Aranzadi) is available in bookshops and can also be bought in  e-book format.


The eHealth Center: the academic centre for e-health

The eHealth Center is an academic centre open to the world whose goal is to educate and empower professionals and ordinary citizens, through the use of technologies, to lead the paradigm shift in health. It is people-centred, using research, education and counselling to contribute to social progress and well-being.


The UOC's research and innovation (R&I) contribute to solving the challenges facing the global societies of the 21st century by studying ICTs' interactions with human activity, with a specific focus on e-learning and e-health. Over 400 researchers and 50 research groups work among the University's 7 faculties and 2 research centres: the Internet Interdisciplinary Institute (IN3) and the eHealth Center (eHC).

The United Nations 2030 Agenda's Sustainable Development Goals and open knowledge provide strategic pillars on which the UOC's teaching, research and innovation are built. More information: research.uoc.edu. #25yearsUOC