The Disease Detectives

If you have tested positive for COVID-19—or have been in close contact with someone who has—then chances are that a contact tracer like Laurie Peters, RHIA, CCS, CHPS, will be the one to break the news.

“I get one of two reactions. ‘Well, this is no big deal. I'll just stay home,’ to, ‘Oh, my God, how am I going to get groceries? I was in contact with my grandkids. I don't know what to do now. I don't know how to get my medicine,’” she says.

Peters then runs through a defined list of questions. Do you have any symptoms? If so, when did they start? Are you self-isolating? Have you traveled anywhere? Who have you been in contact with today and yesterday and the day before that and the day before that—at work, at home, in public?

It’s easy to forget the minutiae of everyday life, so Peters asks follow-up questions as needed, coaxing memories of places and encounters that may identify where the virus has spread and who is at risk.

From these questions, her call list grows. If you can reach those who have been in close contact with a person diagnosed with COVID-19 and encourage them to get tested or self-isolate, you can stamp out embers of infection before they become wildfires.

It’s methodical and exhausting work, Peters says. It takes focus, discipline, accuracy, and speed. It can also be an intensely emotional experience. People disclose incredibly intimate details of their lives, of difficult situations exacerbated by a global pandemic. It’s not enough to collect data. Contact tracers also need to ensure that the person on the other end of the line has access to the resources they need to get through self-isolation.

Picture a health information professional, privacy expert, virus detective, social worker, crisis counselor, and therapist rolled into one, and you are close to understanding what is expected of a contact tracer in the age of COVID-19.

The Test-Trace-Isolate Strategy

Much rides on the success of contact tracing. If widespread lockdowns and shelter-in-place orders were the blunt instruments for “flattening the curve,” contact tracing is part of a precision-based strategy of disease suppression: Test widely and often, identify where transmission is occurring, isolate the sick.

Most public health officials believe that until an effective treatment or vaccine is developed and widely dispersed, massive mobilization of testing and tracing capabilities is the safest path toward rebuilding the economy and resuming some degree of normal social interactions.

However, for this strategy to work, accurate patient demographics are a necessity, says Dan Cidon, chief technology officer of NextGate, a California-based company that focuses on identity management solutions. “Contact tracking is a laborious process that requires efficiency and time,” he says. “Any error or inconsistencies during this process can result in misinformation and the spread of the virus.”

Building an Army

According to the Association of State and Territorial Health Officials, prior to the COVID-19 pandemic, there were only 2,200 contact tracers employed in the United States, mostly focused on diseases such as HIV, measles, and syphilis.

The US is estimated to need 100,000 to 300,000 contact tracers to effectively suppress COVID-19, which means that many future tracers will have little to no healthcare experience. Though training is available, contact tracing has all the elements of a full-time job, requiring specialized skills in patient privacy, disease management, medical terminology, and an understanding of available medical and social resources.

The National Association of County and City Health Officials recommends that states hire 30 contact tracers per 100,000 residents, and has published a workforce calculator to help local governments create staffing budgets.

“I think health information management professionals (HIM) make fantastic contact tracers, because we have the background in data management—what needs to be collected, how it’s structured, and how it can be applied in healthcare,” says Ellen S. Karl, MBA, RHIA, CHDA, FAHIMA, academic director, health information management and health services administration programs at the City University of New York (CUNY).

CUNY has more than 200 students enrolled in the HIM program, and most, according to Karl, have expressed interest in joining the state of New York’s initiative, which requires would-be contact tracers to take and pass a six-hour course delivered by the Johns Hopkins Bloomberg School of Public Health.

As the workforce builds up, however, many states are turning to healthcare professionals like Laurie Peters, who in addition to contact tracing, continues to serve full-time as health IT outreach coordinator for Quality Health Associates (QHA) of North Dakota.

Peters believes that her HIM background has proved invaluable to her role as contact tracer. “I am a die-hard HIM’er,” she says. “I've been a coder, so I can read a provider’s words and their documentation and quickly determine if it’s important for coding purposes. I can listen to my contacts with an HIM ear and determine, ‘Okay, yeah, they said they did this, but that’s really not having anything to do with what we’re talking about. But this little piece of information does, in fact, make a big difference.’"

A Day in the Life

In North Dakota, the state health department asked QHA, which has experience in intensive data gathering services, such as Medicaid case reviews, and enjoys close collaborations with numerous local healthcare agencies and organizations, to offer contact tracing positions to some of its staff.

Based in Minot, a city of 47,000 in the state’s northwest, Peters is one of 10 contact tracers at QHA assigned to two of North Dakota’s five Native American reservations, Turtle Mountain and Standing Rock. Peters expects QHA will be assigned the other three—Trenton Indian Service Area, Fort Berthold, Spirit Lake, and Sisseton-Wahpeton Lake Traverse—in the near future.

Peters’ group is assigned to a case manager, who assigns cases based on individual workload. “If I already have two cases with, say, 50 contacts each, I’m not going to get another case for quite a while,” she says.

The specifics of contact tracing will inevitably vary by local regulations and protocols, but the broad strokes of the job are the same: Hospitals and health departments supply lists of people who have tested positive for COVID-19 to contact tracing facilities.

Tracers establish contact with the patient and determine when they first exhibited symptoms in order to calculate how long self-quarantine should last. Then, tracers work with the patients to identify the places they have been and who they came in close contact with during this infectious period. This generates a list of additional people contact tracers will reach out to and encourage to get tested, self-quarantine, and self-monitor symptoms. The contact tracer will continue to communicate with each of these people for the next 14 days—not just to monitor the virus, but to ensure their contacts are cared for.

“The state has provided us with very detailed criteria that helps us figure out, ‘Okay, how far back do we go? When do we release from isolation? When do we release from quarantine?’ And then the symptoms that we’re looking at, we have our job aides that provide, ‘Here’s what you need to ask. Here’s how you solicit that information.’ The state has done a great job of giving us the tools we need to effectively do this for them,” she says.

With contact tracing, time is of the essence. In May, the state stood up a customer relationship management system (CRM), which made it easier to enter information and automate follow-up surveys sent to contacts with access to email or cellphones once or twice a day.

Peters also works closely with the reservations’ individual public health units to act as “boots on the ground” in case they cannot reach a contact by the usual electronic means.

“If there is an instance where we just cannot get a hold of people or we’re not getting the information we need, then we can reach out to that local public health unit, tell them everything that we know, and they can actually go to that environment, and maybe do some interviewing, and get some information, and then provide some sort of a mechanism to them that we can keep in contact with. That’s worked very well for us,” she explains.

“We have a myriad of resources available to our contacts for transportation, food, daycare,” Peters says. “In some instances, more than a single core family unit live together under one roof, with no email, no internet, and maybe a single phone available in the household.”

More than Data Collection

The contact tracers and case manager meet weekly via Microsoft Teams to ask questions, discuss issues that come up on the job, and receive feedback. Peters says the emotional aspects of the work are the toughest part of the job—and something she can’t use her HIM experience to fall back on.

“Our background is a hindrance because we are not trained on the emotional aspects of sharing bad news. Nurses are. They know how to deal with that. That is an issue for us when people start crying or there’s all these overwhelming emotions,” Peters says. “We have daily COVID touch base calls where we talk through, ‘Okay, this is what happened today. Should we have done something different or not? Did we do it appropriately?’ I was a coder and we read some pretty bad stuff, but in coding we don’t have the face with a name.”

Another challenge to the job is the amount of change from day to day. “In HIM, you give us the guidelines, tell us what we need to do, and we’ll do it,” she says. “But we just don’t have a good handle on COVID-19 yet. The situation is changing so quickly.”

As we learn more about the disease and how it’s spread, the data elements Peters needs to collect changes, so she must adapt to a data-collection environment more fluid than she has been accustomed to in her 30 years’ experience in HIM.

“A good HIM professional is very detail-oriented, and constant change does not fit within our personality very well. That is a challenge that we have to say, ‘Okay, this is what we know today so this is what we’re going to go with. Tomorrow it might change.’"

As contact tracing workforces stand up, healthcare experts like Dan Cidon, CTO of NextGate, are looking at ways to support their efforts.

“With verified address data, health experts can improve the detection of infected persons and ensure that residents at risk are found, diagnosed, and treated,” he says. “Address verification software and location data can also be helpful in powering some of the tech-savvy applications that are in development across the world. Some countries have explored the notion of capturing location data via mobile through Bluetooth signal or wireless apps run by public health officials. While these methods yield much promise, experts will first need to overcome the issues they’ll face with privacy and connectivity issues.”

A Question of Privacy

Planting a flag firmly on the right to health privacy will be one of the greatest challenges in the fight against COVID-19. Tech giants like Google, Facebook, and Apple are pushing apps that collect and anonymize data through smartphones and the federal government has waived certain provisions in HIPAA—all of which have raised significant privacy concerns.

Some states already adopted the use of apps and portals. North Dakota, in fact, recently launched a free mobile app called Care19. According to the state government website, “Once the app is downloaded, individuals will be given a random ID number and the app will anonymously cache the individual’s locations throughout the day. Individuals are then encouraged to categorize their movement into different groups such as work or grocery. The app will only store the location of any place a person visits for 10 minutes or more, and the ID number of each individual contains no personal information besides location data.” However, only a few thousand North Dakotans have actually downloaded the app.

Peters’ 30 years’ experience in HIM certainly aids in her ability to collect health information and take the necessary steps to ensure the privacy of the individuals she interacts with.

“Privacy does play a role in the COVID-19 response,” Peters says. “And the challenge is balancing public health’s need to know versus the privacy of an individual. Securing the patient’s right to privacy is near and dear to my heart,” Peters says. “Contacts share a lot of information. We want as much information as we can get so that we get good data for the state to make their determinations of next steps and how this is going to go. But, at the same time, we want to be cognizant that it is personal information. I just feel like we have to be understanding of that privacy piece, because they’re going to share some very intimate details with us potentially and we need to pay attention to that.”

She believes that after the public health emergency ends, healthcare stakeholders need answers to big questions moving forward.

“It’s a challenge,” she says. “My fear is that something we rapidly put in place during the public health emergency will linger on, like a waiver or process that we quickly put in place and probably wasn’t 100 percent compliant. It’s going to cause a problem in the future if we don’t take the time when this is over and do a full analysis.”

Contact Tracers Wanted

Hundreds of thousands of contact tracers will need to be trained and deployed across the nation to respond to the COVID-19 pandemic. Training and resources are available for individuals as well as states seeking to stand up local initiatives.

The Johns Hopkins Bloomberg School of Public Health, with Bloomberg Philanthropies, launched a free online course to help train contact tracers to reach and assist people exposed to the virus. Registration and the course’s syllabus is available here. Additionally, the Centers for Disease Control and Prevention have created resources for standing up contact tracing programs, which can be found here and here.

Below are opportunities for contact tracing in several states. This page will be updated regularly as new opportunities arise. The Journal of AHIMA would like to thank members of AHIMA’s Practice Councils for researching these opportunities.

Matt Schlossberg (matt.schlossberg@ahima.org) is the editor of the Journal of AHIMA.

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Continuing Education Quiz

Review quiz questions and take the quiz based on this article, available online.

• Quiz ID: Q2019106
• Expiration Date: June 1, 2021
• HIM Domain Area: Clinical Data Management

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