Tracking the spread of COVID-19 could help fight the pandemic — but a lot of people aren’t answering the phone when contact tracers call. To gain the public’s trust, experts say officials should work with community members when they develop contact tracing programs. That’s especially important for poor communities and communities of color, which may be suspicious of the health care system in general, even as they’re facing high rates of coronavirus infection.
“You’re building a new system on top of historic mistrust. You may be trying to reach people who have never accessed primary care, people who are worried about anything related to the government, or who may have mixed citizenship families,” says Denise Smith, executive director at the National Association of Community Health Workers.
Every piece of a contact tracing program has to be scrutinized to make sure it won’t exacerbate those worries — including word choice. When global health organization Partners In Health started working with the state of Massachusetts to develop a COVID-19 contact tracing program, it quickly figured out a key word to avoid: agent.
The organization helped write the scripts for calls with people diagnosed with COVID-19. To successfully gather the information they need, a contact tracer making that call has to have the trust of the person they’re calling. That person has to agree to tell the contract tracer about their living situation, job, and the people they interact with. For some communities, the word “agent” was a surefire way to eliminate that trust.
“If they said, ‘I’m a contact tracing agent, or something that used agent — that’s a trigger word for undocumented people, or people of color,” says Joia Mukherjee, chief medical officer at Partners In Health.
A contact tracing program may ask all of the right medical questions, but if it isn’t designed in a way that’s culturally informed, it won’t be successful. Mobilizing nursing and public health students to make contact tracing calls or creating an app to automate the process, may only work for privileged communities, says Shreya Kangovi, a health policy researcher and associate professor of medicine at the University of Pennsylvania.
“Those things are always going to be expedient, and they’re going to be top of mind to the people who are designing these solutions,” Kangovi says. “But if we’re serious about addressing COVID-19 in the hardest hit communities, that’s not going to work.”
Think about, for example, a 40-year-old woman living in West Philadelphia who works in retail and lives with and cares for her aging mother and teenage son. She’s lost work hours, is struggling to make rent, and doesn’t have internet access or a smartphone. If she gets a call from a contact tracer telling her she’s been exposed to the coronavirus and needs to stay home, she may be suspicious, Kangovi says. But if someone from the community calls and starts by asking what she might be struggling with or what help she may need if she were to stay home, that could be more effective.
“That’s what it means to do culturally competent contact tracing, to have it be baked-in,” Kangovi says.
At minimum, that means asking members of marginalized communities to review the plans for the program and the script contact tracers use to make sure there isn’t language that would make people suspicious. To be most successful, it means hiring people with local experience, like community health workers, to make the contact tracing calls themselves.
Mukherjee saw the importance of local contact tracers internationally during the Ebola crisis. People from the community were accepted as contact tracers, but representatives from international organizations were not. “When foreigners came in to try to do the work without local people involved, they were attacked,” she says. In Massachusetts, Partners In Health is working to hire contact tracers from a diverse set of backgrounds, regardless of public health experience. “For example, we’ve worked with unions to say, okay, these custodial workers are going to be heavily affected, and we need people from those walks of life.”
Some public health departments around the country that initially built contact tracing programs without community involvement had to rethink their approach. Bernice Rumala, a health equity expert and community health worker, says she’s heard from three health departments that have asked for help making changes. One had initially only involved senior-level health department employees in the contact tracing program, which excluded community health workers. They started running into problems in their engagement — which community health workers had already started seeing on the ground.
“They’re now starting a community health worker pilot program, to expand the role of community health workers in terms of contact tracing,” Rumala says.
Public health departments and officials probably already know the importance of outreach to marginalized communities and recognize that people in those communities may be less likely to respond to contact tracers, Mukherjee says. She worries, though, that the focus on equity gets lost somewhere on the path from program development to its final implementation. Funding may not be targeted to those issues. “You have to put your money where your mouth is,” she says.
Violence from public institutions like police, which erodes trust in public health in communities of color, is currently a focus of national conversation. That makes intentionally building programs that can establish trust with those communities even more important.
“And I think that a lot of people are mistrustful because they should be mistrustful,” Kangovi says. Contact tracing programs that include community members can reconnect those people with institutions focused on their health. “Those will not only be the great ingredients to stemming with public health pandemic, but they’ll also go a long way to repairing our social fabric right now.”