When the COVID-19 pandemic hit, it shined a big, bright spotlight on the vital need for information. How many cases were there and where? Which communities were seeing spikes and which weren’t? Local healthcare systems had insight into what was happening at their hospitals, but not at other hospitals. It was the same for city and county officials, who could see data within their own jurisdictions, but not outside of it. This hindered leaders’ ability to make the real-time decisions that were necessary.
In response, a regional data-sharing coalition was born nearly overnight that brought together the Institute for Informatics (I2), the Institute for Public Health, the Regional Data Alliance, BJC HealthCare, Mercy Hospital St. Louis, SSM Health, St. Luke’s Hospital, St. Elizabeth’s Hospital, the City of St. Louis, as well as St. Louis, St. Charles, and Jefferson counties. In this partnership, the Institute for Public Health serves as the data broker, working closely with I2’s Informatics Core Services team to receive electronic health record data from all of the regional partners, build the infrastructure needed to integrate that data, and then compile it and use it to develop models and visualizations for local leadership and officials that show a broader, more regional picture of COVID-19 cases.
“All of these entities collect data but they don’t have an eye into each other’s data. They’re also collecting it on different platforms,” says Randi Foraker, PhD, the director of the Center for Population Health Informatics, who is managing the analytics team for the project. “They’re looking to us for a comprehensive regional picture and geographic analyses. Everyone is coming to the table and is willing to share their data for the health of the region, and it’s very inspiring to be part of that.”
Racial Disparities in the Data
Beyond the basic questions surrounding number of cases and locations of hotspots, deeper questions began to emerge. Frontline workers were seeing what many in the region already knew: that COVID-19 was affecting African Americans at a disproportionate rate.
To help shine the spotlight on this issue, the I2 team built ZIP code-level maps showing COVID-19 cases, ICU transfers, and hospitalizations disaggregated by race. African Americans, which comprise roughly 20% of the area’s population, were accounting for 60% of COVID-positive patients. Plus, underserved areas of the region were the hardest hit and had a greater rate of adverse clinical outcomes. This mirrored what other cities like Chicago and New Orleans were experiencing.
“When we get to the other side, I think this will cause us to ask questions about why certain communities were hit harder than others and question our assumptions,” says Rachel Komeshak, manager of I2’s project management office, who is working closely with Informatics Core Services on the COVID-19 data effort.
Forging a New Normal in Data-Sharing
Among the team members involved in the project, there’s hope that this level of amplified collaboration will continue long after the pandemic — that some of the silos that existed before COVID-19 will be knocked down for good.
“We’re putting in infrastructure right now that can be used down the road,” says Anne Trolard, manager of the Public Health Data and Training Center at the Institute for Public Health, and a member of the COVID-19 data project team. “Data-sharing can be tough — legally and logistically. But now, because of how pressing COVID-19 is, the agreements and infrastructure have come together really quickly, and I’m hopeful we can continue building on that for the future.”
In the near term, that means expanding the group’s current efforts to include building a public-facing COVID-19 dashboard that’s updated daily and features regional data, giving everyone — residents, business owners and officials, alike — access to a single source of truth. “Moving forward, I think it’s critical for the region to have a single source of truth and for stakeholders to be able to access sets of analyses that represent the region — and not just for COVID-19 but for the whole range of population health concerns,” Foraker says. “This pandemic has uncovered and elevated the fact that I2 is very well-positioned to handle large amounts of data and produce actionable insights for our region. To be trusted with these data is an honor.”
“Moving forward, I think it’s critical for the region to have a single source of truth and for stakeholders to be able to access sets of analyses that represent the region — and not just for COVID-19 but for the whole range of population health concerns,” says Randi Foraker, PhD.