As Americans continue to grapple with the COVID-19 pandemic, it’s clear that one key ingredient in managing the spread of the novel coronavirus is contact tracing, a long-standing disease control measure employed by state and local health departments.
In response to COVID-19, states and localities are rapidly deploying contact-tracing programs. But the scale and complexity of these efforts make launching an effective contact-tracing program a complicated undertaking.
This episode of On the Evidence features Candace Miller, a senior researcher at Mathematica who is working with the COVID-19 Community Tracing Collaborative. Miller, who has written a new blog with tips for contact tracing, shares early lessons from her experience with the COVID-19 contact-tracing effort.
Listen below for the full interview.
How did you get involved in contact tracing and and what your role has been?
Back in March, if not earlier, we started seeing all the different data points and news articles coming out about COVID-19: the number of daily deaths, the unemployment numbers, and the pictures of food lines. In many ways, it reminds me of being a Peace Corps volunteer in the 1990s. I was working in a district hospital in Malawi, Africa, in the middle of the AIDS epidemic. It was a different disease, a different epidemic, but we had [similar] problems like not having adequate diagnostics. We lacked [personal protection equipment]. There was no cure. The deaths were mounting, and it really felt like the sky was falling. That was about 25 years ago.
Countries got through the worst of the crisis by professionals coming together and trying things, learning from mistakes, and eventually implementing evidence-based approaches. Here we are now, in 2020, and COVID-19 is globally an all-hands-on-deck situation. I think we [should] take our resources, whether it’s our professional experience, our time, our financial resources, whatever it is we have—I think we need to bring it forward.
This tracing collaborative is a start-up. There’s a remote workforce of more than 1,600 case investigators and contact tracers and resource coordinators. Everyone has come on board in the last five weeks. We’re using a number of different technological platforms and, most importantly, we are here to assist the local health departments and we’re trying to help them understand the situation in their locales and care for their residents so we can stop this pandemic. Given the scope of the effort, I get to do a little bit of everything, soup to nuts, on the COVID collaborative.
Does that include conducting interviews? Are you a contact tracer, or do you determine what to do with the information after the contact tracers have gathered it and how to best leverage it for learning about the spread of the disease more broadly?
My work is focused on coordinating our different teams, working closely with the local health departments and all the things necessary to make this work. That includes understanding the technology and the platform and how to improve it, how to make it more user-friendly for our case investigators and contact tracers. We have scripts to help people through the interviews and the tracing. There are a lot of different components, and because we’re a start-up, I have the opportunity to work on all the different pieces.
My mental image of contact tracing is a person calling individuals who might have been infected and trying to document the potential spread of the disease. But from reading the Centers for Disease Control and Prevention’s website, I gathered that technology and data management are important parts of modern-day contact tracing. Could you explain how technology plays a role today?
Yes, technology is essential to modern-day contact tracing because it is the way that we capture, house, and analyze the information so it is really actionable. What does it mean to be actionable? We need to have good quality data. We need to be able to do all kinds of analytics on it so that we can have, for example, a dashboard. Every city and town should have a dashboard that visually displays where the outbreaks are, the numbers, the connections, who is vulnerable. That’s at a city and town level, but it’s also even at a facility level. If we’re talking about a large hospital that has COVID floors and non-COVID floors, understanding who is at risk and how to prevent that risk is really important. As we move forward and different cities and states open up, we want to be able to see which policies are working and which aren’t.
[We want to be] able to collect the information at the individual level and look at that in the context of policies and sanitation procedures to determine what works and what doesn’t, who is most at risk, where are the places that are seeing more problems, but also where are the places that aren’t seeing problems, so we can figure out what has really worked well. I think a lot of states are struggling with, “Yes, of course we want to open, but how do we do that safely? What is the plan? And if we open, bit by bit, let’s be able to figure out if it’s working.” The only way to do that is to have the numbers. We need to have the data in a clean way that allows us to pull out what works, what doesn’t work, [and to] predict the future, visualize what is happening across places and the interactions across the different places.
From your vantage point, what are some generalizable lessons? For example, what’s surprisingly difficult about contact tracing for COVID-19, and what does it take to do it well?
There are definitely generalizable pieces of contact tracing. At its core, contact tracing is about reaching out to COVID-positive people and making a human connection. We call people at probably one of the most difficult, vulnerable times in their lives because they have an illness that doesn’t have a known cure yet. They’re unable to work. It doesn’t matter if you’re in Kentucky or Minnesota; it's going to be the same. So, we express our concern, we assess their ability to isolate. If they’re COVID positive, they need to isolate to limit exposure. But can they do that? We assess their ability to isolate while they have symptoms, and we aim to link them to services if needed, such as food delivery so that they don’t go out to a grocery store. Sometimes they’ll need medicine like insulin. They may need rent support.
You asked what’s difficult. We know it’s harder to social distance and to work from home, particularly among people in a lower income and an immigrant community. Some work requires going out, whether it is working at a nursing home, food delivery, whatever it is. As a result, some of the lower-income cities have the worst outbreaks and higher rates of COVID cases. For contact-tracing efforts to work across the country, state by state, you really have to think about your vulnerable and hard-to-reach populations and how you’ll be able to reach them. You have to understand the barriers that would get in the way of these populations picking up the phone or speaking comfortably to somebody. Is it a different language? Is it technology? Yesterday, we were trying to get in contact with a woman who doesn’t have a phone, so we were trying to get her a working phone.
I’m not sure each of these things is surprising, but it’s difficult. We have to go beyond just data collection and phone dialing and figure out how we get to people. We need the right language. We need the right words. We need the right tone in our voice, so that we’re communicating care. We have to apply human-centered design and behavioral science to figure out what works. Sometimes, we have to keep trying until we figure out what works.
I think another thing that’s generalizable is how complicated people’s lives are. We may talk with COVID-positive moms and dads who, for example, work multiple jobs in different cities. Maybe the mom is a certified nurse assistant, and she works at two different nursing homes in separate cities, and she lives in a third location where she grocery shops. And her husband also works in several jobs and in different cities. He’s been exposed, but he keeps working because they need the income. The economic realities mean there are difficult trade-offs for people with low income. If they isolate, they have lost wages, and they’re not able to provide for their family, but if they don’t isolate, they risk spreading the virus.
I initially thought of contact tracing as more of a transactional process in which you might call someone to acquire information about the spread of the disease and that person’s recent social contacts. But what you’re describing sounds much more like relationship building and a little bit of social work, too. It sounds like there’s a nuance and an empathy required in order to do this well.
Absolutely. It’s important to remember that we’re doing two things. We are trying to understand how people are doing and if they need resources because we can’t just come and take information from them. We have to meet them where they are. In the time of COVID, that means we’re calling people who may be struggling to breathe. They may literally be having a hard time breathing, and we want to know who they’ve been with. At a human level, you can't call someone who’s having a hard time breathing and not have that empathy and that social work approach to the conversation. You can’t hang up the phone without trying, without really racking your brain to think, “How do I help this person?”
Of course, you really want to get the information because you want to stop the outbreak, but you have to meet them where they’re at. There was someone on Friday who said, as they picked up the phone, “If you don't help me, I will kill myself.” So, you must deal with that mental health situation and that extreme anguish before you can do anything around tracing.
We were up late last night working on a case where the woman is experiencing violence in the home, and she’s sleeping on a kitchen floor with her children and trying to stay safe. We want to limit exposure, but those children and that woman need to be somewhere safe.
You do need to know the local resources, whether it’s hotlines, food delivery, access to personal protective equipment whatever. In some cities, there’s a hotel where somebody can go and safely isolate. Whatever those services are, you have to know about them.
It’s surprisingly difficult in that way. You come across these situations in many cities and towns. We’re an extension of the city and town health department and so, if they have services, we need to link those together because that’s what’s going to get us through this pandemic.
Given how important it is to establish that human connection and trust in contact tracing, what are the major privacy considerations, and how can public health officials thread the needle of gathering precise, comprehensive, and timely information without violating people’s trust?
Contact tracing is something that local health departments would do on a regular basis anyway if there were a measles outbreak on a college campus or if somebody got chicken pox because they missed a vaccine and traveled to another country. Local health departments are used to disease surveillance databases and information. A contact-tracing program is an extension of a local health department, and all of the laws, rules, and standards around data security would apply. Now the rub is that, for example, in this situation, we have a 1,600-person remote workforce, and we’re scaling up very quickly. So, what does that mean for data security? We must abide by every law and standard and need to have the platforms to allow us to gather information. But [we also need] to ensure that at the very core, we are protecting every bit of personal information, and we’re never transmitting names or phone numbers or addresses in any way that could be linked back to a person. You use case numbers that can’t be linked back to the person to communicate with health departments about what is happening.
The public trust is essential, and I think everybody implementing a contact-tracing program needs to live and breathe the reality that if you lose the public’s trust, you cannot do disease surveillance and manage outbreaks. We need to manage the data as though it is the gold that it is and communicate to people that we will not in any way violate your data and your trust in our care of that data. There’s no tracing without public trust.
Need practical tips on how to conduct contact tracing for COVID-19? Miller penned some recommendations here.
Learn more about Mathematica’s work on contact tracing here.