COVID-19 Data Miss A Lot Of People — Raising Questions

What does it take to make good data? That's an important question, especially after a year of watching COVID-19 statistics being lobbed around by the minute. We need good data to see how this year has gone and to know what action to take in the future.

Unfortunately, says Dr. Paul Spiegel of Johns Hopkins University's Center for Humanitarian Health, in lower-income countries and among certain at-risk populations, reliable data aren't always available. So when people cite statistics, much of the world is left out or assigned inaccurate data.

Where are the gaps in data collected on the coronavirus pandemic? How does a lack of data affect fragile populations such as refugees or those in conflict areas? Spiegel, who wrote about such issues in an article published on Monday in Nature Medicine, spoke to NPR about these questions and about how wealthier countries can really be of help to low-income nations — and shared the one piece of data from the past year that really shocked him.

We have been bombarded by numbers and statistics this past year. How much of what we hear gives a true picture of what is going on globally?

In many high-income countries, where the health and data systems are better, I'm much more confident in the data. Unfortunately, in the areas where I work — fragile states, humanitarian emergencies and forced displacement settings like refugee camps and conflict areas — the data are really poor, and the anecdotal data and stories we're seeing don't provide a very consistent picture.

Why are the data poor?

One, there have not been sufficient tests in some of these areas where we are seeing very high positivity rates. And one can interpret it to mean gosh, it must be really bad there. But are we only testing those who are really ill and in the hospital?

Furthermore, to really understand how the populations have been infected and affected, one needs seroprevalence surveys to see how many people have antibodies, and that hasn't occurred in most of the places where we work. Without these tests, we may be missing so many people that may have been infected but were asymptomatic and never tested.

Is there one piece of data that just gobsmacked you this past year?

In our early work, we did some modeling in the Rohingya camps, and we used early data from China and Europe. Our assumptions were that there would be extremely high transmission rates, the hospitals would be overwhelmed and there would be an increase in deaths, but proportionally less than other countries because there are more children and less older people. That is what we predicted and told the U.N. and NGOs [nongovernmental organizations] and government. What surprised many of us is that while the transmission rates may have been as high as we predicted, hospitals in many places were not overwhelmed, and it is possible the high death rates did not occur. There is of course always some question if deaths were being hidden, but I've been surprised in many situations in conflict and refugee settings that hospitals appear not to have been overwhelmed like we've seen in other countries.

Have countries been sharing data on the pandemic?

I think it depends on the countries. Epidemics, and particularly pandemics, can be politically sensitive for reasons that we all know. For vulnerable populations like those in conflict and forced displacement settings, there's already a lot of discrimination. So there's an understandable concern that we have to be careful with the data so as not to exacerbate a situation that is already quite negative.

As we have seen in the U.S., politicians have taken advantage of the anti-refugee and anti-migrant sentiment to actually stop people from entering the country. They are using it in a guise to say we're going to help keep the U.S. population safe. However, it's a populist move because they're still allowing people to cross borders — commercial traffic, Americans and people with specific visas, etc. We've seen this before with HIV and with other epidemics — policies that really aren't public health and evidence based used for political purposes.

What is the real failure in data collection over the past year?

In humanitarian settings, data has not been collected in a systematic manner. In some of these countries, we don't know what the transmission has actually been. We should have been able to put in place much stronger contact-tracing systems, and it should be easier to do it in these settings than in the U.S. because community health workers and systems already exist. But that seemed to fail in many settings.

At the beginning, there may have been concerns by those running the health care systems that community health workers would become infected, so they may have stopped. Furthermore, there may not have been enough PPE [personal protective equipment] to do this safely and/or it took time to implement protocols.

Another problem is that the U.N. and NGOs didn't always want to share their data because they were concerned it may be used in a stigmatizing manner by governments, armed groups or the host populations that could negatively affect refugees or asylum-seekers. The worry is that if some of the data is misconstrued, double discrimination against refugees could occur — that is discrimination because someone is a refugee and falsely claiming that he/she spreads disease. But in actuality, we've shown with studies in the past on HIV and malaria that refugees generally don't spread disease more than those in the general population.

Currently, here in the U.S., there has at least been some data on migrants and asylum-seekers entering the U.S. Tests have been done, and while there are some inconsistencies, they generally show the number of people with COVID is quite low. It might be because people crossing the border are younger, healthier and not the people at the highest risk.

How are you working around data you don't have?

Since we don't have the data in many of the settings that we're working in, like conflict settings in Yemen and Syria and refugee camps, we've been trying to look at analogous situations (refugee/IDP camp settings with high-density, young populations living in poverty). We're not really sure about the transmission levels in many low-income countries, but [residents] appear to not be getting as sick or dying in the same numbers as in many high-income countries.

We're trying to look at similar situations as some refugee camps, such as the slums in India where they appear to have high transmission but also appear to have lower-than-anticipated morbidity rates. It might be due to a combination of factors such as a younger population, protection due to other illnesses that they have already been exposed to or perhaps protection from the BCG [bacille Calmette-Guérin] vaccination against tuberculosis that people in higher-income countries don't receive. We just don't know at present all of the reasons.

What can we learn from the past year in terms of how wealthier countries have supported low-income countries through this pandemic?

We, as a people globally, can now feel a bit more what it may be like to be a refugee in an emergency and not having any agency. Decisions are being made for us, from businesses closings to mask-wearing to quarantine. I am not saying it is inappropriate in such a serious situation as a pandemic — just that suddenly all these decisions one is used to making for oneself, now someone else is making them.

The humanitarian community is used to responding to large-scale outbreaks like Ebola, and we have our ways of doing that. We send in many expatriates. We send in a lot of money. It is a paternalistic approach where you have the U.N. and international NGOs running things along with the governments depending on their capacity.

This time, we're not sending in the so-called cavalry — sending in expats and telling countries how things should be done. That didn't happen because we're all at home trying to take care of our families and our own countries and [because of] travel restrictions.

Many people have rightly stated that the humanitarian community is Western dominated and its origins are colonial in nature. I think there are good intentions, but the way we provide assistance needs to be decolonialized. We need to have both those that are affected as well as the health systems and education systems in those countries capacitated. I hope that we can use this pandemic as an impetus to really make changes in the way humanitarian systems and coordination are provided.

It's obviously not all or nothing, but it's been eye-opening for everyone to see how governments and national NGOs have been able to respond without the same assistance they would normally have if this was a much more localized event. The responses appear to have been variable, and it's difficult to know the outcomes because of relatively poor data. However, it is clear that there is capacity for governments and local NGOs to respond when given the chance. I hope the pandemic will now provide a different lens as to how humanitarian assistance can be provided.

How can recipient countries shift away from how humanitarian assistance currently works?

I have worked with the U.N. and various international NGOs in the past. When one is used to a certain system that has been in place for decades and [it] benefits an organization in terms of influence, power and financially, it is hard to make changes from within. But if donors say we can do things differently, then there could be change, and perhaps the pandemic can be an impetus for this change.

We need to ask ourselves: Do the U.N. and international NGOs need to send the same amount of people to future humanitarian emergencies? Can we provide support through Zoom or through other ways? How can we better provide the education and training that's needed for people from countries affected by humanitarian emergencies to become the main responders and leaders in the future?

I have been impressed by how the Black Lives Matter movement has resonated well beyond the U.S. I think with a push toward the decolonization of aid and Black Lives Matter, many of us are looking at not just how we can provide assistance more effectively in the future, but who is providing it. At present, it's still predominantly white people from high-income countries who are running the U.N. and international NGOs. This has to change.

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