More than two years into the Covid-19 pandemic, it has become glaringly evident that, in addition to the health crisis, we are facing an information crisis. With misinformation and politicized narratives1P. Sol Hart, Sedona Chinn, and Stuart Soroka, “Politicization and Polarization in COVID-19 News Coverage,” Science Communication 42, no. 5 (2020): 679–697. layered on top of uncertainty2Jonathan Koffman et al., “Uncertainty and COVID-19: How Are We to Respond?” Journal of the Royal Society of Medicine 113, no. 6 (2020): 211–216. and skepticism,3Bastiaan T. Rutjens, Sander van der Linden, and Romy van der Lee, “Science Skepticism in Times of COVID-19,” Group Processes & Intergroup Relations 24, no. 2 (2021): 276–283. public health institutions have struggled to communicate4Molly A. Sauer et al., “Failure to Communicate? How Public Messaging has Strained the COVID-19 Response in the United States,” Health Security 19, no. 1 (2021): 65–74. how people can protect themselves from Covid-19. Compounding these issues, for people who are undocumented, disabled, LGBT+, economically disadvantaged, or Black, Indigenous, People of Color (BIPOC), mistrust of the medical field draws from histories of medical mistreatment5Beacon Press, 2017More Info → and carceral violence.6Ruha Benjamin, “Catching Our Breath: Critical Race STS and the Carceral Imagination,” Engaging Science, Technology, and Society 2 (2016): 145–156.
In a complex media landscape, contact tracing offers a crucial moment of information sharing between health officials and the public. Contact tracing is a chance to collect information about individuals who have been exposed to the virus, but also to share guidance on local resources and best practices for staying safe. In the context of an emerging information crisis compounded by mistrust of medical institutions, it is crucial that BIPOC and other historically overpoliced groups participate in contact tracing. For participation to happen, however, contact tracing must be seen as a valuable form of community aid, and the circumstances in which it is experienced as an intrusive form of surveillance and policing.
Through research supported by the Social Science Research Council, we conducted interviews with 19 contact tracers and tracees from Providence, Rhode Island, and Philadelphia, Pennsylvania. In terms of tracees, we only interviewed those who identified as BIPOC. All interviewees shared their perspectives on what made contact tracing—and, more specifically, information sharing—successful, as well as what hindered exchanges between public health institutions and communities of color.“Our interviews emphasized that contact tracing is a pivotal moment of information exchange between people and institutions, and focused on the tensions around contact tracing for BIPOC, which were amplified when it seemed like gathering data came at the cost of expressing care or empathy.”
A deeply collaborative effort, this project brought together students and researchers from the University of Pennsylvania and Brown University and activists from two grassroots collectives, Creative Resilience Collective (CRC) and Free Radicals (Free Rads). We chose to conduct research in these two cities—Philadelphia and Providence—because we felt connected to our neighbors and community members. Together, we developed a research process that was equitable and reflexive, and that draws from experience with data science, racial justice, mental health, and urban informatics.7Rosemary Clark-Parsons and Jesse Lingel, “Margins as Methods, Margins as Ethics: A Feminist Framework for Studying Online Alterity,” Social Media + Society 6, no. 1 (2020): 1–11. Our interviews emphasized that contact tracing is a pivotal moment of information exchange between people and institutions, and focused on the tensions around contact tracing for BIPOC, which were amplified when it seemed like gathering data came at the cost of expressing care or empathy. Interviews also pointed us to the need for policy interventions, including building empathy into the contact tracing process, treating contact tracing as a continued conversation rather than a one-off exchange, and greater transparency around safeguarding personal health information.
Contact tracing as information exchange
Institutions and (dis)trust
Even without the context of a health crisis, building trust between people and institutions is a multifaceted process8Gabrielle Samuel et al., “Ecologies of Public Trust: The NHS COVID-19 Contact Tracing App,” Journal of Bioethical Inquiry (2021): 1–14. and a key challenge for contact tracers tasked with building rapport. We found that the success of contact tracing efforts depended in part on the level of trust in the institutions conducting calls. Though some scholars challenge the assumption that input by public health authorities is more trustworthy and persuasive than those made by the average individual,9Nathaniel Geiger, “Do People Actually ‘Listen to the Experts’? A Cautionary Note on Assuming Expert Credibility and Persuasiveness on Public Health Policy Advocacy,” Health Communication (2020): 1–8. our interviews show that BIPOC tracees seek the credibility of recognizable authority figures in public health. Amidst a landscape of pervasive fear and uncertainty, institutions with this name recognition were described as more likely to help facilitate the gathering of personal information, community contacts, and activity reporting. In Providence, the Rhode Island Department of Health (RIDOH) represented a trusted public health institution, often creating a degree of name recognition and implicit buy-in from the start of the call. The University of Pennsylvania’s School of Medicine (Penn Medicine) operated as something of a parallel institution in Philadelphia. Many residents are familiar with Penn as the city’s largest employer, or with Penn Medicine as a care provider. As one tracee, Jeff, shared with us: “I used to be an employee at Penn, I am a patient there, I trust the reputation of that organization.”
While name recognition can buy some initial goodwill, we found that these institutions still invoke wariness in BIPOC. Minnie, a tracee from Providence, recognized the distrust people had toward healthcare professionals, either due to the invasiveness of the testing process or because “some people are not trusting of healthcare, period.” Jeff tied distrust to histories of racism in healthcare: “Certain fears, it comes from a history, a line of people of color, African American, Black and Brown people volunteering what they think is the right thing to do, but there was ulterior motives in medicine.” Mattie made a similar argument, noting: “Understandably, people of color are…less likely to share more information about themselves because they don’t know where it’s going [and] because of this country’s questionable history of using people of color and Black people’s information.”
For undocumented BIPOC, navigating both offline and online risks of discrimination and deportation can be even more complicated.10Tamy Guberek et al., “Keeping a Low Profile? Technology, Risk and Privacy among Undocumented Immigrants,” Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems (2018): 1–15. Emily, a tracer in Providence, explained the importance of emphasizing privacy protections on calls with undocumented tracees who were “really hesitant” and “[didn’t] want to get in trouble.” Etta, also in Providence, related her concerns about whether the information she gathered was truly limited to the Department of Health: “Can this [data] go to the federal government and could this adversely affect undocumented people?… ‘We don’t think so,’ ‘I don’t know,’ ‘it should be fine.’ [The supervisors] weren’t telling me no.”
Tracers and care
Contact tracing is fundamentally about gathering data. But our interviews showed that while some tracers grounded their work in empathy and advocacy on behalf of tracees, at times, gathering data seemed to take priority over demonstrating care and empathy for tracees.
Even when members of the public recognized the institutions responsible for contact tracing, a successful call required additional emotional labor on behalf of the tracer. Previous work on health data collection practices reveals the emotional challenges of facing demands from multiple actors,11Azra Ismail and Neha Kumar, “Engaging Solidarity in Data Collection Practices for Community Health,” Proceedings of the ACM on Human-Computer Interaction, 2 CSCW (2018): 1–24. needing to be open and empathetic to deal with sensitive topics,12Peter Wright and John McCarthy, “Empathy and Experience in HCI,” Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (2008): 637–646. and managing personal responsibilities and boundaries in conjunction with feelings toward patients.13Julia Lawton et al., “Uncovering the Emotional Aspects of Working on a Clinical Trial: A Qualitative Study of the Experiences and Views of Staff Involved in a Type 1 Diabetes Trial,” Trials 16, no. 1 (2015): 1–11. Many of the tracers we interviewed referenced a sense of personal responsibility in facilitating information exchange, drawing on interpersonal skills and resourcefulness to locate support. Beyond providing people information about symptoms and treatment, tracers described the importance of asking how tracees were feeling and to hold space for listening. “It’s Covid-19, so a lot of people feel alone. They don’t have anyone or they lost their job. They lost a loved one… I just want them to be comfortable and realize we’re all in this together,” said Amelia, a tracer in Philadelphia.
For other tracers, a sense of accountability to their publics extended beyond the call itself. Faced with protocols that they perceived as inadequate, some tracers advocated for trauma-informed changes in their interview guides and for increased departmental awareness about health equity. “There was no racial or health equity training until we spent months asking them and telling them to do it. And then we were finally able to,” Etta, a tracer in Providence told us. Other tracers we spoke with echoed the importance of internal discussions around the contact tracing process. Natasha, a tracer in Philadelphia, noticed that her calls felt strained when gathering demographic information, particularly when followed by questions on the feasibility of quarantining. She brought this issue to her supervisor and team, and had the questions removed.
Despite the efforts of contact tracers, there was often a gap between the realities of contact tracing protocols and expectations of the public. Many of the tracees we interviewed imagined a multistep tracing protocol that allowed time to process shock and ask questions. Instead, several tracees experienced fleeting and/or inconsistent communication: one-time or automated check-ins, phone numbers that they couldn’t call back, and no follow-up communication. “I just didn’t have enough time to digest what [the tracer] was saying,” Minnie said. “[Q]uestions came to mind and I couldn’t call back the number she called me from.” Covid surges and resulting tracer crunch further rushed these exchanges. Amelia, a tracer from Philadelphia, was making 75 to 100 calls per day during a 2020 surge. “[Y]ou are just kind of rushing through each individual and that’s not great… Because it’s like, ‘Okay, well did I miss something?’” Whether the cause is underfunding, understaffing, or a lack of care within public health agencies, tracees often experienced contact tracing as mechanical and lacking empathy. In short, tracees’ data often seemed more important to public health institutions than their well-being.
This view wasn’t limited to tracees; Gina, a tracer, felt that contact tracing was far too limited when it came to providing meaningful forms of assistance: “We collected the data that you wanted… So now how are we going to actually help these individuals? Because they have to be in quarantine or isolation and they probably don’t have enough food for today.” Within RIDOH’s contact tracing program, the services connecting tracees to food, financial, and medical assistance (regardless of documentation status) were immediately “pushed to the side” when the agency became overwhelmed by cases (Etta, Providence tracer).
Social responsibility and community safety
“Frequently, a sticking point in requests for information had to do with providing names or contact information for others who may have been exposed to the virus.” Though tracees had misgivings about the institutions asking for their information or the unsympathetic quality of these conversations, participants typically provided the information requested from them. Interviewees described the decision to participate as coming from a place of social responsibility, in line with prior work that attributed health data participation to a global public good14Wolfgang Buchholz and Todd Sandler, “Global Public Goods: A Survey,” Journal of Economic Literature 59, no. 2 (2021): 488–545. and an act of altruism.15Sharon K. McCann, Marion K. Campbell, and Vikki A. Entwistle, “Reasons for Participating in Randomised Controlled Trials: Conditional Altruism and Considerations for Self,” Trials 11, no. 1 (2010): 1–10. As Alice (Providence) explained: “I do like my private situations to remain private, but in this type of scenario, I feel like… it has to be [an] all-hands-on-deck type scenario.” Frequently, a sticking point in requests for information had to do with providing names or contact information for others who may have been exposed to the virus. Many tracees were willing to report their whereabouts and interactions but wanted to get consent from others before divulging names. A major contributing factor to this fraught moment of information exchange was the persistent uncertainty of how contact tracing information would be saved or shared. Georgia described her hesitation with sharing contacts she might have exposed as anxiety around the lack of details on what would happen with that personal information: “I think it would actually be helpful to talk about how this information will be used… I was actually glad that I didn’t have to hand over people’s phone numbers… I almost feel like if you’re going to call them, let me call them first.”
Lessons and interventions
The unpredictability, novelty, and transmissibility of Covid-19 present incredible challenges to public health institutions, and it is not surprising that resource-strapped municipalities have struggled to build a robust framework for contact tracing. But with continued hesitancy surfacing around Covid-19 vaccinations,16Shingai Machingaidze and Charles Shey Wiysonge, “Understanding COVID-19 Vaccine Hesitancy,” Nature Medicine 27, no. 8 (2021): 1338–1339. we need to reimagine information exchange between people and institutions. In thinking about how our interviews can inform public health policy, we offer the following insights and questions:
- Information exchange, not extraction. Rather than extracting information from people who have tested positive or been exposed to Covid-19, what would it look like to set up contact tracing as a two-way flow of information? How might public health organizations design avenues for community members to request information and gain access to resources?
- When tracing BIPOC individuals, contact tracing must prioritize empathy and care. Moreover, contact tracing should be thought of as an introduction to a longer conversation rather than a one-off exchange. Follow-up phone calls and check-ins via text or email were mentioned as key modes of signifying meaningful care about someone’s well-being—an act of seeing tracees as people rather than data points. We note that such an approach to contact tracing would require funding, intentional training, internal flexibility and inclusivity, and emotional support for tracers themselves.
- Both tracers and tracees should know what happens to data. Tracees should experience contact tracing with a sense of dignity, which requires empathy from tracers and the organizations they represent, and agency over the information they share. Without meaningful knowledge and transparency around personal health information, contact tracing will continue to play into long-standing fears about misused and misappropriated information.
Covid-19 will not be the last pandemic to test the relationships between people and public health organizations in the United States. While contact tracing was a key feature of many countries’ responses to the pandemic, our interviews reflected a broader failure to utilize this resource as part of a larger public health toolkit. We hope that the findings and interventions from our study can be utilized to develop a more robust and equitable form of information exchange in the future.
Banner photo: CDC/Unsplash.