Government, academia, and the public have relied heavily on new data tracking systems throughout the COVID-19 crisis. An end to the pandemic should not mean an end to data utility. This novel infrastructure must be maintained to address existing public health crises as well as prepare for the next deadly virus.
The COVID-19 pandemic has been a game changer for data. The concept of “real-time” health data was practically unheard of before 2020. Many public health officials, researchers, and policymakers had to wait months or even years to access data. While the development of pandemic data systems has been incredibly difficult and there are still a plethora of problems, the country is on a much better track now. No one who has been involved in this pandemic across academia, government, and public health wants to start from scratch next time. However, many are also exhausted and cannot maintain this breakneck pace as demonstrated by the ever decreasing regularity of state reporting. We need a clear vision of a path forward that improves, repurposes, and maintains this incredible pandemic data infrastructure so that we are better prepared for the next crisis. That is why we convened the most recent Pandemic Data Initiative Expert Forum: The Future of Data, bringing representatives of government, public health, and academia together to discuss what we should do with our data infrastructure next.
Throughout her career, Amanda Daflos, the inaugural executive director of the Bloomberg Center for Public Innovation and former Chief Innovation Officer for the City of Los Angeles, has consistently demonstrated that data can improve government. She has led many data efforts to improve governance and the livelihoods of all citizens both before and during the pandemic. Amanda explained that COVID-19 data has truly revolutionized how we assess and investigate disparities in our communities, from health to education to public transportation to employment and more. Data with granular demographic and geographic metainformation could be transformative for communities, which has been demonstrated in Louisville, KY under the leadership of Mayor Greg Fischer.
Mayor Fischer extolled the “irrefutable and indefensible disparities in health outcomes with root causes in poverty and structural racism,” as revealed by data aggregated in his city’s much-lauded LouieSTAT initiative. We have the opportunity to stabilize and integrate these COVID-19 demographic data systems into existing decision-making processes, using the data in a meaningful way. Government is meant to serve its citizens, and data only improves this service.
“We can always do better,” says Mayor Fischer, who has relied on data to design policies for everything from street repaving to the city budget. COVID-19 data streams do not need to be relegated solely to the pandemic. They have better defined our communities and their struggles, and a government focused on serving the public should be thrilled to have this data accessible and be seeking any opportunity to continue collecting and using it in a sustainable manner.
Health departments and public health officials have always been some of the biggest collectors and users of data, but even Hawaii State Epidemiologist Dr. Sarah Kemble was surprised at how much public health data has entered the forefront. Prior to this pandemic, data was neither timely nor widely available to the public at the local, state, or federal levels. Now though, public health officials have learned that public access to data, analysis, and interpretation is a key component to crafting responses to health crises. This does not have to be unique to COVID-19. Dashboards and public data updates could be used to combat obesity, hypertension, diabetes, and many other health problems plaguing society.
These data can also ensure that public health responses are more equitable and effective. Due in part to equity-focused implementation of data-driven public health measures through LouVax, Louisville did not experience severe racial disparities with COVID-19 cases and deaths, unlike many other cities. Dr. Kemble clarified that these public health strategies can be less effective when the quality of demographic data is compromised by outdated and overly broad race and ethnicity categorizations. Even if COVID-19 demographic data collection efforts continue post-pandemic, the way the data are collected will need to be modernized and standardized to better respond to the diverse needs of communities.
This data granularity has also equipped researchers and modelers in a never-before-seen manner. As explained by Dr. Shaun Truelove of the Bloomberg School of Public Health, modeling helps us predict and prepare for the future. Modeling can help state health departments design control measures and vaccination plans, local health systems assess capacity and equipment needs, and policymakers take actions that affect everyone. Dr. Truelove shared the example of modeling the potential influence on disease transmission of expanding COVID-19 vaccination efforts to the 5-to-11-year-old age group. This highlighted that data specificity, timeliness, and granularity are what makes these models sufficiently accurate to influence policy. More available data — from wastewater analyses to personal behavior — only improves the models, which could then be repurposed to address other diseases that come in waves, such as seasonal influenza.
However, as COVID-19 potentially shifts to an endemic disease and modelers become more frequent users of the data, we have to ensure that as much data as possible remains public. Public availability allows researchers to access and utilize these data without submitting usage requests that cost time and are not always approved. Data may no longer be summarized on overpass signs at the end of this pandemic, but that does not mean data should no longer be available to the public.
We have made incredible progress in the realm of public data, but should not consider the job over. As succinctly put by Mayor Fischer: new systems often evolve from innovation to improvement to maintenance. We are now in maintenance mode, and it will be much easier to start from here during the next crisis than react to it and begin innovating and implementing from scratch. However, maintaining these systems will require significant investment from states and the federal government. Dr. Kemble explained that investments have to include workforce development, data modernization, standardization, data sharing, and equity.
Systems will also need to be sustainable. As policy is crafted more long-term, a daily reporting cadence may no longer make sense outside of a crisis. This could reduce the burden on staff who have worked diligently at all hours to provide the best data possible. It was incredibly challenging for staff to build this infrastructure, and it would be a mistake to abandon it. We must continue to fight to preserve and build upon the pioneering data collection and reporting infrastructure that so many people dedicated their lives to building over the past two years. It should stand as a monument to another chapter in the history of a nation that always turns to innovation and ingenuity to tackle existential threats.
Dr. Truelove insisted that now is the time to have the conversation about what components are necessary for a standing public health data surveillance system that will provide detailed, actionable data, but avoid staff burnout and wasted resources.
Like almost every day in this pandemic, what comes next is unknown. It is clear, though, that the relationships we have built throughout this crisis will be critical. It will take intentionality in our actions to build a future where data can inform policy, improve health, and infer what’s to come. The key is getting together to form a unified vision about data and how we can use it to make that world a reality. I am highly encouraged by these panelists and hope that the relationships established here will become part of a network of data champions who will ensure that the efforts and investments in pandemic data will not be forgotten.
Please watch the forum in full here.