Q&A: Pandemic Data Initiative Provided Unforeseen Insights

As we pass the one-year anniversary of the launch of the Pandemic Data Initiative (PDI) at the Johns Hopkins Coronavirus Resource Center (CRC), it’s time to reflect on this effort. The PDI was originally conceived by CRC executive team members Beth Blauer (BB, Associate Vice Provost for Public Sector Innovation) and Dr. Lainie Rutkow (LR, Vice Provost for Interdisciplinary Initiatives). The initiative has been immensely successful at spotlighting the state of public health data policy in the United States, and Blauer and Rutkow agree that the PDI serves as a model for how to harness academic expertise to influence public policy conversations.

What inspired you to start the PDI?

BB: We have to begin with the inception of the CRC. I was planning a trip to India, so I was looking for COVID-19 data to see whether or not it would be safe to travel. I stumbled upon the global map, and thought that, as a data person, there are huge opportunities for us to improve and expand upon visualizations. Dr. Josh Sharfstein then connected me with Lainie, since she was developing the institutional strategy for COVID-19 data visualization.

LR: When I mentioned Beth and her team at the Center for Government Excellence to President Ron Daniels, he enthusiastically supported the idea of marrying their expertise with the work of the global map team in the Center for Systems Science and Engineering (CSSE).

BB: President Daniels asked us to think of a few ways to visualize this data, so Dr. Sara Bertran de Lis and I started building out data visualizations in consultation with Lainie and epidemiologist Dr. David Dowdy. We also started working with consultant Dan Stone on the web functionality. Then I brought in my colleague, Mary Conway Vaughn, to help us stay organized and embed a project management philosophy in the CRC. At the same time, President Daniels connected me with Dr. Lauren Gardner, the CSSE director who had launched the global map. Lauren and I started devising a plan for a division of work, where I was going to focus on the United States, and she was going to continue to run the global map, all connected through data infrastructure built and maintained by the Applied Physics Laboratory (APL).

LR: All of this was happening while Marianne Von Nordeck, Assistant Vice President of Communications, and I were furiously building a strategy for the One University CRC effort. By spring 2021, one year into the pandemic, the CRC was going strong, but it wasn’t intended to go on forever. Amazing things had been happening, including honors from Time Magazine and Research!America, but we needed to catch our breath a little bit and think about what we've learned, where we've been, and where we should be going.

BB: We also knew that we had a unique view of the challenges that were presented by the data itself. We were trying to get that voice out through op-eds and news coverage, but the audience was very selective. We wanted to start carving out space within the CRC itself to lend our own voice to these far-reaching data problems.

LR: We spent a lot of time talking about how this idea for the PDI hinged on hiring the right person who had the ability to clearly communicate the complexities of public health data, pandemic policies, and epidemiology. That’s when Dr. Joshua Porterfield joined the team to anchor the steady production of content that has flowed through the PDI and the CRC every week for the past year, oftentimes attracting national media attention. We never would have guessed that the right person among all of our applicants was going to be a PhD in chemical and biomolecular engineering who was also interested in policy and communications. It just proves you never know.

Can you reflect on the faculty Q&As and the importance of multi-disciplinary perspectives on data?

BB: Once the CRC took off and started to get a lot of attention globally, we had many faculty coming to us with different ideas and contributions for the CRC. There was so much interesting work going on across the university, and we wanted to be able to showcase that. We had been highlighting some faculty and faculty-led projects through CRC blogs, but there was no dedicated place to showcase the thought leadership of Johns Hopkins faculty, particularly around how they were aligning our data to their research. The Q&As have been a way for us to be as inclusive as possible and acknowledge how much innovation occurs across this institution.

LR: We are just scratching the surface of what Hopkins faculty are doing, thinking about, and creating relative to the effective deployment of data. The PDI is at the center of not just public sector innovation, but also the expectation of data as a way to inform personal decision making across a host of health outcomes. Also, these interviews show that when we think about data governance and the relevant stakeholders, it's a wide net that spans different disciplines.

What have the livestreamed expert forums shown about the relationship between academia and external stakeholders?

BB: The forums were a great example of how academia can host critical conversations that bring policymakers and public health expertise together. They also highlighted the huge opportunity for government to perform that never materialized. I'm really interested in having these conversations and getting these perspectives, but what’s next? Our recaps and the writing that we did in the PDI comprise playbooks for folks who could make decisions and policymakers who should be thinking about these issues. It is a unique voice that is not politicized. It's just straightforward facts.

LR: We had originally conceptualized the forums as invitation-only, closed-door events. The idea was to convene the people who were deep in the data and get them to talk about things that they might not want to in a public venue. What we learned is that, in the spirit of democratizing data, we made the right call to make them all public. Anyone who wanted to could hear the conversation, ask questions, and engage with these different experts that we brought together.

Have any of your opinions on data changed through the work of the PDI?

BB: First of all, COVID-19 taught us a lot about the appetite for state governments to have standards and guidance from federal partners around how data shapes their decision making. There was always this mischaracterization that it wasn't the role of the federal government to create those standards, and that it should be up to the states to determine how they collect and assess information about health and the field of public health. The reality was that states were desperate for guidance that didn't materialize, especially early on in the pandemic.

That was a big shift because we thought that there was much more maturity in the way that data was handled at the local level and the impact that data was having on public health decisions. That granularity of knowledge has all of a sudden been exposed in such a way that we would not have been able to see without this public health emergency.