COVID-19 testing, putting a face to the numbers

Earlier this week we launched the COVID-19 Testing Map. In only a few days we’ve already received contributions from across Europe, North America and Asia which is already beginning to tell a new piece of the story.

Since 2011 we have tried to create a platform that gives some control back to people, so they can have a say in their own narrative. In Fukushima, for example, residents have have been able to show that the prefecture is not a nuclear wasteland, as clickbait headlines might have people believe, but rather a vibrant and active population deeply invested in their future. By taking their own environmental readings and publishing their own stories, they’ve had some control in how they are represented rather than relying on someone outside to tell their story for them. We’ve seen similar experiences in other communities around the world as well.

In 2020, when the new Coronavirus began spreading around the world we immediately saw similarities and tried to offer some advice from our experience to make what was inevitably coming next go a little smoother. We knew we had to do more, but at the same time we didn’t want to just rush in and replicate things many others were doing well already. There was an ever-growing collection of dashboards and reported case numbers and visualized graphs, representing confirmed cases, tests and deaths. Through these we began to realize something was missing, a human element. Getting lost in the daily reports of which numbers had increased by what percent were the stories of the people who were suffering but not included in official accounting. It was already becoming clear that testing was not available to everyone, which was yet another point of pain.

Almost a decade ago we saw firsthand that a lack of information causes more stress, and more conflict. In 2011 there was a mandatory evacuation zone around the Fukushima Daiichi Nuclear Power Plant. People who lived in that area moved away immediately. But there was also a voluntary evacuation zone where people were given the opportunity to evacuate if they felt the need. Unfortunately, those people did not have access to an accurate and reliable source of information about what radiation levels they may or may not be exposed to if they stayed, which caused many to assume the worst and created significant social stress. People found themselves stigmatized and resented whether they moved away or decided to stay. Safecast was able to give these people a way to measure their own environments, to get accurate information from which they could then make educated decisions. This in turn put pressure on official sources to release more data as well.

Today the situation is not entirely dissimilar – if someone feels sick and thinks they might have been exposed to COVID-19 a test would allow them to know if they should quarantine themselves so as not to risk infecting others, and would allow them to know if they should be prepared to seek additional medical assistance. Do they go to work or should they stay home? Visit friends and family or isolate themselves? What if an older family member asks for assistance? Without access to testing, people are left wondering, and left to assume the worst – often alone. While we didn’t have a way to immediately get more tests to people, we did have a way to help those people tell their stories – with the hope that enough stories would create a compelling argument that would motivate politicians and governments to increase the availability of testing, to put people’s minds at ease and help people make better educated decisions.

So we put up our map and asked people to tell their stories. And in only a few days, the stories are pouring in. Not unexpectedly, the stories of people who have been turned away from testing are harrowing, and heartfelt. Here are a few examples:

Though not every story is heartbreaking, equally insightful are the stories from people who were able to get tests, and a stark contrast in some cases to read just how easy it was for that to happen. As these examples show:

The obvious point is that any of the people who received negative test results were set at ease. They could relax a bit and go back to their lives, as much as possible, without this stress hanging over their heads. Had they not been able to be tested, they may have spent weeks anxious and wondering, which could lead to other problems. Access to testing was more than just answering a question.

Sadly, not all test results have had a happy ending.

This is only a small sampling of the stories people are telling us. You can read them yourself at this page. Looking at the map view, zoomed out as well as closer in, patterns begin to emerge. As more people see this map, more stories will be contributed and it’s our hope that a larger picture will become clear and the need for comprehensive widespread testing will become obvious. People deserve to know what they’ve been exposed to and what they might be exposing others to. As a global community if we are going to take the appropriate steps to stop this pandemic, we need to, and deserve to have access to information about our health and our environments.