Q&A: The Future of the Pandemic Data Initiative

The second part of our conversation with Pandemic Data Initiative (PDI) founders, Associate Vice Provost for Public Sector Innovation Beth Blauer (BB) and Vice Provost for Interdisciplinary Initiatives Dr. Lainie Rutkow (LR), explores the legacy and ongoing work of the project. We have done our research, convened the experts, and served as a clear voice on public health data and policy over this past year. Ms. Blauer and Dr. Rutkow reflect on the PDI’s impact and what is next for this important work they started a year ago. Please click here to read part one of this interview.

What impact has the PDI had on national and international conversations about data?

LR: We pushed and promoted conversations that might not otherwise have happened, or would have happened in a less structured format. When we brought people together for the expert forums, maybe those people would have had some of these discussions, but certainly not together and not in the introspective, public manner we established. We seeded many important conversations.

BB: Before I did this work for the PDI, I would have never been invited to brief the White House and Congress on the opportunity to invest in public data as a way to improve government and the outcomes government is designed to provide to Americans. That's a big signal. It's clearly an indication that people are taking us seriously and that we have a role in this work going forward.

Is there an ongoing need for public availability of public health data after this crisis?

BB: We've proven a few things during the last two and a half years. One is that, especially in this country, people can and will seek out information about public health, look at data, and draw conclusions about their own personal lives. It’s crazy to think that people aren't going to want quality data in regards to seasonal flu, outbreaks of diseases like measles, or the next public health crisis. Just as people receive information about their buying habits across the Internet from their credit card companies, people are going to see their health data in a way that actually helps inform decision making.

LR: A lot of recognition the CRC has received is for making data accessible and usable by the public in an unprecedented way. It'll be very interesting to see over the next few years how much of that sticks because the public learned a whole lot about data during this pandemic.

What are the most needed policy changes regarding public health data?

LR: Continued investment in data infrastructure. There's a well-documented cycle that happens whenever there's a disaster or emergency: everyone becomes super focused on the crisis while it's happening, but those investments fade over time. People move on and months or years go by, then the next emergency happens and we have to start over again with infrastructure and resources. Hopefully we're able to not fall back into that traditional cycle and see some of the massive investments that have been made to build data-related infrastructure actually stay in place and remain supported, so that they don't have to be rebuilt when the inevitable next crisis happens.

BB: I also think it’s important to invest in research to fundamentally understand how effective communication can save lives. There was something so explicit in the fact that COVID-19 was miscommunicated on many levels. It was evident that there wasn't a strong communication strategy. The way that people listen and learn and act is deeply connected to the capacity to instill trust. One of our differentiators was that we were a trusted source, but we had a whole communications shop filtering everything that we were doing. It felt like our governments didn't have that same level of attention, which created competing narratives. A lot of confusing information was shared, and a lot of misinformation was able to take hold of decision making around the world, so there has to be an investment in how we communicate public health essentials.

What are the ongoing data needs to support a more equitable future?

BB: What happens is that you've got slivers of the Centers for Disease Control and Prevention, slivers of the Department of Health and Human Services, slivers of other parts of the federal government, that are supposed to be the thought leaders in this country for equity and data, but they didn't have a regular routine of looking at and thinking about the data every day. That's why I think we were successful: We had the ability, resources, and discipline to ensure every single day that everything that we were doing was bringing the best quality and value of data into the world. We talk a lot about that governance in subtle ways throughout the PDI because it was at the core of our success.

LR: I also want to highlight the relentless push that we had within our team for excellence, and not being willing to compromise. We always came up with workarounds for data challenges that seemed impossible or that no one had addressed in real time before. We did so in a way that hopefully was useful for those making policy decisions in both the private and public sectors.

One of the best examples is our deep dive into demographic data. We discussed this frequently at the PDI, but it was a huge lift for the data team to centralize and somewhat standardize demographic data across all states. We then coupled that with analysis and expert insight to show what the most necessary action items were. There needs to be nationwide standardization of demographic data collection and significant updates to current categorizations. That will have a huge impact on equity in the future.

How will you continue to push for better data for better outcomes at Johns Hopkins?

LR: Beth’s entire operation with the Center for Government Excellence and the Bloomberg Center for Public Innovation just moved into the Provost’s Office, which supports a strong connection between the traditional academic side of Johns Hopkins and the public sector. That team and those connections are going to lead in the months and years ahead to all kinds of partnerships that bring together academics, practitioners, and policymakers in different ways.

BB: The CRC helped us solidify our position as a team that can mediate between the academic view of using data to inform policy and the policymakers that actually make and implement policy. We want to do work that’s not just translation to the public, but transforming the way that we think about the creation of public policy through data. That is a skill that researchers don't necessarily innately have because either they've never worked in government or they don't have experience in policy making. We're redefining the role of academia. We're showing the agility that actually can exist, and I think it's going to have a generational effect on what we really think about research and data.