To regain trust, the CDC must show its work

It’s been just over six months since physician Mandy Cohen took the helm of the U.S. Centers for Disease Control and Prevention (CDC), emphasizing that making the agency more transparent is essential for rebuilding the public’s trust in our national health agency. To achieve this, the CDC must get better at sharing data with the public.

A promising step is the recent overhaul of CDC’s COVID-19 wastewater monitoring data tracker, which has made it far easier to interpret those data. But much more work is needed to reverse the substantial decline in the agency’s public support since the start of the pandemic. By 2022, one-quarter of Americans reported having little or no trust in the CDC to make recommendations. The agency has experienced dips in trust during past emergencies, such as 2009’s H1N1 influenza pandemic and 2014’s Ebola epidemic, but the current one is larger and longer-lasting.

The pandemic is a big factor in the CDC’s flagging support, but perhaps not for the reason one might expect: A national poll conducted by Harvard T.H. Chan School of Public Health faculty found that public trust in the agency was tied less to its control of the spread of COVID-19 and more to whether it followed “scientific evidence in developing policies.” This suggests the CDC needs to continue to show the public the evidence underlying its recommendations.

Since the start of the pandemic, the CDC has struggled to provide timely and actionable data individuals can use to make decisions to protect themselves, their families, and their communities. The public and media instead turned to nongovernmental sources such as the Johns Hopkins Coronavirus Resource Center and the COVID Tracking Project.

Cohen and her staff face many obstacles to fostering better data-sharing by the CDC. The agency is hobbled by U.S. policies that give primary responsibility for public health to the states, which vary in their approaches or abilities to share public health data with the CDC. The pandemic exposed the effects of decades of underinvestment, which has left gaping holes in the pipeline of data that move from health facilities and laboratories to states and ultimately to the CDC.

In April 2020, as COVID filled emergency departments to capacity and beyond, data on race and ethnicity—an important risk factor for hospitalization and death—was missing or incomplete in 65 percent of COVID cases reported by states. Eventually, states started collecting and reporting case demographic data more reliably. But gaps on race and ethnicity remained in other important COVID-19 data, such as who was getting tested for the virus. Without an easy mechanism to collect and aggregate demographic data, CDC and other health officials must often pursue multiple pathways to track them down, such as trying to contact patients over social media.

There are also problems with how the CDC shares the data it has access to. Wastewater surveillance data has become a key metric for COVID-19, especially now that most people can test themselves at home but rarely, if ever, share their results with their health care providers or public health officials. The CDC’s COVID wastewater page initially showed data in a way that was hard to interpret: the percentage of wastewater sites experiencing an increase in concentration of the virus over the last two weeks.

About a month ago, the CDC revamped how it displays wastewater data. It is now possible to see the data displayed as a simple linear trend that shows whether the amount of virus in a community’s wastewater is going up or down, how quickly it is changing, and for how long these trends have been occurring. The site also now shows these trends by territory or state and county. It may seem like a small development—indeed, CDC Senior Advisor Niall Brennan said the site overhaul took four weeks to complete—but the changes make it far easier to understand whether COVID-19 is increasing or decreasing where you live.

The CDC has much more work to do to achieve the same level of visibility for other disease information on its labyrinthine website. For example, respiratory syncytial virus (RSV), a virus that infects the respiratory tract, garnered a lot of media attention in the summer and fall of 2022 when it triggered sharp rises in infections and hospitalizations. At a time of high anxiety about a serious public health threat, it should always be easy to find data that help people understand their risks and how best to protect themselves.

It’s easy to find the CDC’s general overview of RSV, from which you might stumble upon its research page and discover the RSV-Net site, which depicts RSV-associated hospitalizations—though only in 12 states. Or you might find a page entitled “RSV National Trends,” which is part of the National Respiratory and Enteric Virus Surveillance System, but if you did you’d see hard-to-parse laboratory test data rather than easier-to-understand hospitalizations. Both sets of surveillance data lack context, making them hard to interpret. Neither provides compelling data to the questions most people visiting the site would want to know: What is happening where I live, and what should I do about it?

That is just one example of why it is urgent that the CDC continue to improve the accessibility and usability of its data. Cohen could do worse than to remind staff of that basic tenet of expository writing: “show, don’t tell.” We live in a time when people read scores of online user reviews and watch videos before they buy products. It’s hard to imagine a U.S. public accustomed to such visibility simply accepting the CDC’s advice to change their behavior without being shown why those recommendations exist in the first place. Into a void of official, transparent, and actionable data enter conspiracies and mistrust.

I believe Cohen can restore public trust in the CDC if she can get the CDC to show that its recommendations are based on sound evidence. To prove to the public it is doing so, the CDC must show the data upon which it relies for its recommendation.

Source images: Kulpreya Chaichatpornsuk / iStock