Better Data for Better Governance Is Well Within Our Grasp

It is truly astounding to me that we began this Pandemic Data Initiative over a year ago in May 2021. At the time, vaccines had recently become widely available, the Delta variant had not yet spread across the world, and the United States was just surpassing 600,000 deaths. Now we have made it through Delta and Omicron, and are looking forward to the day where we transition out of the pandemic phase despite the fact that our country has now endured one million COVID-19 deaths.

We established the PDI because many of the faults in the national and international responses to COVID-19 were rooted in low-quality data and ineffective data practices. Many people, from policymakers to lay people, were confused by pandemic data yet still relying on it to make critical decisions. In the US, at the federal level, data standards were not established and enforced, resulting in a patchwork of state systems that could not interface well with each other. Data should have been one of the most powerful tools in fighting this pandemic, yet it was often mishandled and, at times, contributed to misinformation.

Unfortunately, most of the systemic issues with public health data that motivated this initiative are still present today. There is still outdated, under-funded, and insufficiently staffed data infrastructure at the local, state, and federal levels, which is now exacerbated by employee burnout. States continue to use their own unique systems of data collection and reporting in the absence of uniformly mandated federal data standards. Many marginalized and under-resourced communities are experiencing a rapid deepening of historic health disparities due to continued inadequacy of demographic data.

While the current picture seems grim, I do believe that the PDI has made a significant impact on public health data policy. This impact will be understood and appreciated more clearly in a post-pandemic world as we modernize our systems to better defend against future crises and build the system’s capacity to confront daily challenges in the systemic complexities of healthcare. Through our work, the CRC team is able to identify and highlight most of the major data issues in the United States and internationally, providing detailed analysis and, most importantly, expert insight on possible solutions. We constantly campaign for better, reliable, public data from elected officials to better support their constituents and inform their own work. And we spotlight the many success stories along the way as public health officials at the local, state, and federal levels worked tirelessly and in good faith to hew to self-imposed standards. Through our efforts we get to engage with more members of the public than I could have ever predicted. This work also enabled me to testify to Congress on public health data standards and interface regularly with the White House on data. Our efforts to help were certainly noticed and will not relent.

We also made many new connections both internally and externally. Our Expert Insight Q&A series has engaged with over 50 faculty from almost every school and division at Johns Hopkins University & Medicine. We unearthed a treasure trove of incredible thought leadership on every aspect of public health data from an impressively diverse group of people. I am thrilled that we can provide a platform to share their perspectives and expertise, and I hope that we can continue to work with each other.

The PDI network has grown across the entire United States from Maryland to California through our bi-monthly Expert Forums. Representatives from academia; local, state, and federal governments; nonprofits; public health departments; and the media shared their on-the-ground experiences that reflect the gravity of the issues we raise at the PDI. I am honored to have had the opportunity to speak and connect with these data champions. It shows that there are dedicated public servants in all fields across the country. One of the biggest lessons I have taken from the PDI is the critical importance of personal relationships in data interpretation and sharing. I believe that the new relationships we have formed can one day lead to a coalition of determined professionals that will be able to address many of these data challenges.

Our fight for better data for better outcomes isn’t over. As we transition through different stages of the pandemic, public health officials and healthcare workers still need to track outbreaks to allocate resources and assess vaccine efficacy. Local leaders still need to identify areas and groups with low vaccine uptake to perform improved, targeted outreach. Molecular biologists still need SARS-CoV-2 samples from diverse locations and people to ensure variant tracking systems are well supplied.

Improving our public health data systems is not just important for COVID-19. With over 1 million U.S. deaths and more than 6 million fatalities around the world, we should never be so unprepared for a public health crisis like this again. The toll on human lives and livelihoods is unacceptable, and everyone should understand the importance of preparing for future events. When hurricanes destroy levees, we rebuild them and build them better (hopefully). The same goes for a public health disaster. We need better disease surveillance that can rapidly communicate vital data nationally and internationally. Strong data systems in one state are pointless if there are no systems in other states or they cannot interface with each other. As we so clearly learned during this pandemic, when it comes to infectious diseases, no one is safe until everyone is safe.

That is why I am so excited to continue my work with public data in the Provost’s Office at Johns Hopkins. Through the Bloomberg Center for Public Innovation, we will be able to expand and strengthen our collaborations with faculty across this institution and help connect them to local governments where their ideas and expertise can make the biggest impacts. The Bloomberg Philanthropies City Data Alliance through the Center for Government Excellence will empower us to help 100 cities hone the data skills that, as this pandemic showed, are so important for policymaking. These are just two examples of our ongoing interdisciplinary and impactful work.

Everything we have achieved so far would not have been possible without our incredible, talented, committed team that was often juggling multiple balls that were occasionally on fire. The PDI would not exist without the efforts of Dr. Lainie Rutkow, Vice Provost for Interdisciplinary Initiatives. She has ensured that the PDI has a strong, clear voice that reaches everyone who needs to hear it. Our blogs have been inspired by the trials and tribulations of our world-class data team led by Dr. Sara Bertran de Lis and our fearless leader for our global data collection, Dr. Lauren Gardner. Their struggles to make sense of often confusing, contradictory, and missing data have helped make the Coronavirus Resource Center one of the most trusted sources of pandemic data and kept the PDI grounded. Lastly, I want to acknowledge Dr. Joshua Porterfield, content lead for the PDI, without whom none of these blogs, Q&As, and forums would have been produced on time and at such a high quality.

The PDI would also not have been possible without the strong support of Johns Hopkins University. Faculty interest in our efforts has been clear since the early days of the Coronavirus Resource Center, and so many have enthusiastically contributed to our content thus far. Finally, this work has been made possible by you, our regular readers. After a career trying to get the general public to care about public data, COVID-19 forced more than a billion people to explore our maps, data, and analyses. Outside of this pandemic, there are many areas of our lives that we should govern with trustworthy and ethically-sourced evidence. I hope we continue to care deeply about high-quality public data and encourage our elected officials to lead with science.

This week, the PDI will publish the second part of the Q&A with Lainie Rutkow and myself as we discuss the impact and future of the work at the PDI. We will also have another final forum later this summer, which will be announced on the Coronavirus Resource Center homepage as well as in the weekly newsletter. Thank you so much for engaging with me and the PDI over this past year. While content will no longer be released every week, the work of the PDI is not over and there are many exciting opportunities ahead.