Biden COVID data director on plugging deadly information gaps in a pandemic

Introduction

Data and transparency are key to saving lives during this pandemic. To make decisions on everything from visiting relatives to reopening schools, both officials and the public need to know whether hospitals have enough beds, whether social distancing is lowering cases, where hotspots are and much more. 

Emergency physician Dr. Cyrus Shahpar is the White House’s COVID-19 data director, having spent many years fighting infectious diseases at the Centers for Disease Control and Prevention and later at the nonprofit Resolve to Save Lives. He now leads a team reporting to White House Coronavirus Response Coordinator Jeffrey Zients. In his first tweet on the new job, he announced that the Biden administration would release state pandemic reports that the previous administration refused to publish and that the Center for Public Integrity first uncovered and collected weekly to share with readers and local reporters. 

He spoke to Public Integrity from Northern California, where he is working from home. 

*This conversation has been edited for length and clarity.

You made the state profile reports public recently. Why was it important in your mind to do so?

Thanks to your work [on those reports]. I value transparency and objective information. One of the big things missing in the U.S. has been a consistent look at the disease situation. We’ve had a fragmented approach in terms of how states and local jurisdictions characterize the COVID situation. So it’s hard to really understand across the country, the levels of disease and things like that, because they’re defining it differently. There’s different thresholds, there’s different targets. 

Something like the state profiles report, which was produced for most of the past year and distributed to governors and not made available — we were clamoring for it to be available. So I was excited at the opportunity to make that information public, because one of the main things you want to do is make sure the public is well-informed.

The Biden campaign promised a pandemic data tracker. What’s the status of that and what will it offer? 

We see that as the CDC data tracker and continuing to improve that. So there’s been some changes to that, led by CDC, of course, in terms of developing it into a better product. Any product can be improved. 

We looked at different ways the American public was interacting with government websites, and really the vast majority turned to CDC to look for information on COVID. We really wanted to make sure that that trusted source is providing accurate information and continues to provide new things as new things come out. For instance, the vaccine program. They’ve added a number of new pages to describe the progress in that area. They’ve added a new weekly update that you can sign up for. 

The state profile reports previously contained advice from the White House Coronavirus Task Force to states and local jurisdictions. They don’t anymore. How is the Biden administration giving customized advice to local leaders on what measures they should be taking to curb the virus?

We’re continuing to look at the products that we put out: the community profiles, the state profiles. And we’re in the process of improving what they have. So right now you’re not seeing that piece that has advice. We want to make sure that that advice links to CDC guidance, so you’ll probably see some additions in that area. 

But in the meantime, we certainly have had ongoing engagement with state and local jurisdictions. This week I’ve been on calls with all the governors, with the state and local associations like [the Council of State and Territorial Epidemiologists, the Association of State and Territorial Health Officials], also with individual states. We have a number of folks that reach out to states. 

I think we’re still getting the feedback, and then trying to provide the information that could help inform states on the actions they can be taking. It’s just not in writing in the state profiles right now. But the work is going on.

We’re learning more and more about people who tested positive for COVID-19 but are still experiencing symptoms weeks or months later. What are the challenges to gathering data on these folks and is it important to do so?

It’s extremely important. I think we tend to think of COVID as cases and deaths, right, but from a public health perspective, we’re interested in morbidity and mortality. And so that group of folks that got infected and continue to have lingering symptoms, we’ve seen studies showing that this can go on for months. 

So we really need to understand the [long-term consequences] of COVID-19. I know that this involves partnering with clinicians to understand the clinical needs of patients after acute infection, how frequent these symptoms are, what the characteristics are, so understanding some of the pathophysiology around it. And that includes also analyzing electronic health data and establishing studies. 

CDC and NIH have embarked on a number of studies looking at this, enrolling patients with COVID and controls without COVID, looking at their baseline health and monitoring them over time. We’re trying to understand what the patterns of disease look like with regard to COVID in the long term. The big thing is also mental health, which is a component of this. 

CDC has invested over $40 million on understanding that. NIH has received over a billion dollars over the next four years to study this. We really want to make sure that we understand some of these effects and also consider that in the big equation of the impact of COVID. It’s just some of this work, by nature, takes time. 

What are other pandemic data gaps you’re hoping the federal government can address soon?

Certainly the equity metrics. Demographic information — the completeness of this data varies, whether it’s test cases, hospitalizations, deaths or vaccine administration. We want to improve that information and its collection and continue to chip away at barriers with regard to that, where we see problems or incomplete data, so that we have a better picture of where the gaps are. I think another one is just improving the objective guidance on community and personal mitigation at different levels of disease. 

We’re working with CDC, being led by CDC on that. As guidance around this comes out, we want to make sure that it’s easy for people to understand, “Okay, what does that mean where I am?” So just trying to get to that granularity that’s informed by evidence. 

And then certainly variants and how they contribute to the overall disease patterns. We have multiple variants. It’s a very complex issue. We have limited visibility into variants and how they spread. But this is an area that we really want to give the full-court press to understand how COVID could evolve in the country and around the world. 

The last thing is a broader issue, which is we need to start to chip away at the aging infrastructure, the public health infrastructure especially around information systems, modernize those data systems and workflows. Paper versus electronic — just gaps that we see in different parts of the country. I know that the administration’s put some funds toward that.

Liz Essley Whyte is a reporter at the Center for Public Integrity. She can be reached at lwhyte@publicintegrity.org. Follow her on Twitter at @l_e_whyte.