Beth Blauer was invited to testify before the House Committee on Energy and Commerce’s health subcommittee regarding her experience with COVID-19 and the role data can play in shaping more equitable responses in the future.
On June 24, 2021, I testified before the House Committee on Energy and Commerce’s Subcommittee on Health regarding new legislation surrounding the use of data to advance equity and public health. It was an incredible experience, and I am grateful I had the opportunity to share my experience deploying data to improve outcomes for the American people with this Congress.
Over the last 18 months we have done something truly remarkable as a nation. In the face of a devastating and deadly pandemic we quickly marshalled leading edge data resources to help us navigate unknown territory and save lives. The most important lesson that I will take away from this work is that we can do this. As we continue to keep this virus at bay, I urge policy makers at all levels of government to continue this work and scale it to the entrenched social determinants of health that regularly interfere with opportunity, economic mobility, and all the promise and potential of our great country.
Below is my abridged testimony, which is unavailable online with complete audio due to technical complications with some portions of the hearing. For my full thoughts in the Congressional Record, please visit this link, and the full recording of the hearing is available on the House Committee for Energy and Commerce’s website, here.
My first job in the public sector was nearly two decades ago when I worked as a juvenile probation officer for the state of Maryland. I led an ambitious cross government data initiative that was credited with significant outcomes for residents ranging from marked reduction in infant mortality, nation leading school performance, to record low crime rates. Since 2015 I have led a center at Johns Hopkins University (JHU) focused on building the capacity of local leaders to use data to improve outcomes, and for the last 17 months, I have been the data lead for Johns Hopkins University’s Coronavirus Resource Center.
The bills that are the subject of today’s hearing go a long way to realign federal resources with interventions that are proven, measurable, and focused on ending multigenerational health and wellbeing disparities.
In the last 18 months, government at all levels did something incredibly remarkable. They built data collection efforts, shared data, and made real time decisions that were based on near time data. Never before has the nation endeavored to realize a coordinated effort around data sharing, data informed decision making, and collective outcome measurement at such scale. Local and state governments used every possible lever to stall the spread of this disease including the difficult decisions of closing businesses and schools, using only the data available to them.
What has this last year plus taught us about using data to collectively solve problems?
At the Johns Hopkins Coronavirus Resource Center, we became a trusted resource for millions of viewers worldwide. Over the course of weeks, JHU developed a methodology for scraping public data and encouraged state and local governments to share their data in standardized ways. JHU data scientists set up internal governance and articulated standard collection methods under the guidance of public health and medical experts. We openly shared the entire process with the public.
By January 2021, we had accrued more than a billion views. Our audience included news outlets, local governments, and everyday people that were making deeply personal decisions about how they would navigate their public lives. The backdrop to our entire pandemic experience was and continues to be a hunger for sound, publicly available data.
This Congress has an opportunity to capitalize on this public demand for data, the financial investments we already made in data infrastructure, and the newly minted analytic skill that has emerged across government during the COVID-19 pandemic and improve upon the systems to provide accountability, accessibility, consistency, equity, and sustainability. But there are lessons I can offer that have been helpful over the course of my public sector career.
The first instinct when you consider strengthening a data practice is to think about IT modernization or tools. But the truth is, the most important element of a strong data practice is actually in the governance and alignment of creating a common language and rules around how and why data is collected and applied to problem solving. Across the many simple definitions vary, multiple agencies with different ways of collecting addresses, enrollment numbers, the definition of recipient, race or household variables that make understanding conditions in our communities challenging. This will not be solved by one agency; this is an interagency dilemma that requires a centralized administrative focus.
State and federal demographic data does not align. Inconsistencies in categorization between states and even within states make data incomparable and can obfuscate the disproportionate effects that the pandemic and, in reality, across all programs targeted at entrenched social determinants of health have had on people of color. During our COVID tracking we learned that some states even lack standardization within their own health departments, using different demographic categories between testing data and vaccination data. Without standards there is no way to analyze available data to locate vulnerable populations and appropriately intervene.
Finally, whenever possible, make data public. While I applaud that many of these bills require data collection in a manner that is anonymized, disaggregated, and stratified by race, ethnicity, age, sex, geographic region, they do not all provide a plan for public dissemination, which is a shame as these data will be high-quality, high-resolution, and in high demand.
Government will not be able to turn the tide on the social determinants of health alone. It will require deep coordination and public engagement in the most intimate of ways. Our center at JHU continues to work to build the capacity of local leaders to use more data as they examine their own practices and architect on the ground strategies to deliver better outcomes for people but they need the support of our partners within the federal government to have the greatest impact.
Title image from Jessica Rodriguez Rivas, CC BY-SA 4.0, via Wikimedia Commons.