Coronavirus has hit Brazil hard, and its spread has only accelerated since June. In July, Brazil was second only to the United States of America in both the number of cases and deaths, and there’s no sign numbers will level off anytime soon. Yet Bolsonaro seems to want to pretend the pandemic doesn’t really exist. He refuses to acknowledge the seriousness of the disease, repeatedly referring to COVID-19 as “just a little cold”, and attending political rallies without a mask and shaking people’s hands. This denial has influenced data collection on COVID-19 cases and vast underreporting and inadequate testing have become the norm. While The World Health Organisation recommends reporting suspected, probable and confirmed cases, Brazil’s public dashboards only show confirmed cases.

After a judge ordered the government to reverse its decision, the health ministry’s data dashboard was restored, but public trust in the accuracy of the figures had been severely eroded. It’s widely suspected that Brazil’s true figures are much higher than the official 1.5 million cases and 64,000 deaths. And that is by no means trivial, since a country’s data reporting methodology not only influences policy-makers’ decisions and determines how health practitioners respond to the crisis, but also how the general public behaves and their ability to make informed, potentially life-saving decisions.

Inequality is a health risk

Despite the president’s downplaying of the pandemic, sadly the situation is dire. And it is particularly devastating for those in peripheral and favela communities who often have limited access to basic sanitation, water and health services. Brazil is one of the most unequal countries in the world and the disparities are especially stark in Rio de Janeiro. Around 25 percent of its 6.7 million residents live in favelas. These vibrant, informal settlements are often marred with violence and police operations that more often than not involve brutality. They are now also places where unprecedented COVID-19 data collection is being carried out every day.

“It’s widely suspected that Brazil’s true figures are much higher than the official 1.5 million cases and 64,000 death.”

Typically, residents in favelas live in crowded, multigenerational housing conditions that make it difficult to social distance or isolate. As professor of health communications at the Federal University of Juiz de Fora in Brazil, Wedencley Alves explains, this translates into higher health risks: “It has been shown that the lethality of the virus is up to 3%. But poor social conditions can increase the lethality three- or even four-fold. The virulence of inequality has been the greatest tragedy in this pandemic. In this scenario, the correct information could help these populations reduce the damage caused by inequality.”

Favela inhabitants generally have limited access to information about the pandemic. But grassroots groups and volunteers quickly took on the task, and a series of favela-focused digital dashboards popped up at the beginning of the pandemic to help inform residents about cases in their area. Such as Voz das comunidades, a citizen-journalism magazine founded in 2005 by youngster René Silva which has grown into an important information channel for Rio’s favela inhabitants. It started a Covid-19 favela dashboard covering more than a dozen favelas. The data is collected directly from hospitals and medical centers in the area.

"It has been shown that the lethality of the virus is up to 3%. But poor social conditions can increase the lethality three- or even four-fold."

Although these are the same sources as used for public statistics, the dashboard publishes them much faster and with more accurate geographic and demographic information than the city’s website, which is paramount to an adequate and timely response to the pandemic. Initiativse have emerged offering local statistics for the larger favelas, but not for the smaller ones, which include many of the city’s 1,000 favelas.

“You cannot develop a response without data”

That’s where the Catalytic Communities non-profit organization, which has been working with favela communities for over 20 years, comes in. Catalytic Communities partnered with local leaders, community based organisations and teamed up with mapping platform Esri to launch a unified COVID-19 data dashboard (Paneil Unificador COVID-19 Nas Favelas do Rio de Janeiro) at the beginning of July.

The team, largely made up of volunteers, harvest data through a variety of sources: public dashboards, news articles and a network of favela-based rapporteurs collecting case and death data in their communities. The rapporteurs have been trained to report data accurately and are responsible for one community each, making sure there’s no double counting.

What might really make a difference for people in a favela is symptom-based data collection and analysis. An auto-reporting tool allows people living in a favela to report their symptoms and receive medical advice in return. “The self-reporting tool was developed by international health experts. It allows people to click on a button, fill out a form, and find out if they are low, medium or high risk,” Williamson explains. Individuals are directed to a medical professional if they are deemed medium or high risk. Data on symptoms can improve the analysis of the spread of the virus too, since it is easier to identify local contagion hotspots at an early stage as more and more people use the tool.

What might really make a difference for people in a favela is symptom-based data collection and analysis.

“A response [to the pandemic] relies on data. You cannot develop a response without data,” Williamson concludes. “Rio’s favelas could be the global epicenter of the pandemic; they are at much greater risk than the formal city of being exposed to and spreading Covid-19. This compounds the need for data specifically on these communities.”