How Is COVID-19 Case Data Collected?
By: Amanda Makulec
Tags: Covid 19, Public Health, Data Visualization, Information Systems, Covid 19 Testing

In March, NPR wrote about why it takes so long to get COVID results back. While innovations like pooled sample testing can address issues of lab capacity, in many cases our fragmented information systems further complicate the speed of sharing information.

As reports in the U.S. emerge of test results taking days or even more than a week, today’s “real-time” case counts represent tests from days past. With tests recommended 5–7 days after exposure, the patient is uninformed about their status in the critical 4–6 day window after exposure when viral load may peak. Staying home during that window is highly recommended to prevent possible community spread, even without a confirmed positive test result.

These testing timelines and information system nuances may feel overly technical, but any time we work with a data set as data visualization professionals, we should spend time interrogating and understanding how the data was collected.

Data about COVID-19 is no exception — and even if we’re not creating charts and dashboards with this date, understanding how the data is collected can help us be more informed readers of charts and graphs about the pandemic.

How is COVID-19 case data collected?

To understand how case data is collected, we need to understand what steps happen from the time when someone arrives for a viral test and when their result appears in a database. Who is involved? How many different systems does testing data touch? How many different opportunities are there for delays?

To answer these questions, I interviewed three public health experts involved in COVID-19 testing and reporting to learn about the data collection process in early May. I spoke to experts in locations across three different countries to learn about the differences in how the process works in countries with highly decentralized public health information systems (the United States), primarily provincial public health information systems (Canada), and national health information systems (South Africa).

The information gathered represents illustrative information flows for each location based on one key informant interview, and should not be generalized as representing all sites throughout the given country, state, or province. Many people, policies, and technology innovations can impact the processes and timelines. Even from the time of these conversations two months ago to the current state of affairs today, processes and timelines have likely changed.

Instead of providing generalizable processes, these journey maps give us a glimpse into the work that public health, medical, and laboratory professionals do daily to track the spread of COVID-19, and a better understanding of why the COVID-19 case data can be so messy.

About the Journey Maps

The phases of collecting COVID-19 case data are similar across locations: (1) test swab taken, (2) laboratory processes run, and (3) data making its way into a central database that reports into national systems.

Within those phases, the complexity of the process and the number of people and platforms involved varies across counties, states/provinces, and countries.

You may be surprised to see words like “spreadsheet” and “fax,” but the reality is that many public health information systems still rely on these technologies and have significant reliance on public health, laboratory, and medical professionals for data entry and transmission.

The journey maps reflect the process for late April and early May, approximately three months after the first cases were confirmed in the U.S. and Canada and less than two months from the first case in South Africa.

Interviews were conducted through a convenience sample, focused on individuals I knew who were working on the response. Note that in the early days and weeks, these processes were far less efficient as testing and data capture processes were put into place, and over the last two months since the interviews were conducted, the processes and timelines may have evolved.

The number of days to render lab results or notify a patient can vary significantly based on test volume, so timing estimates are presented in the illustrations only when the duration was somewhat consistent at the end of April.