What the Fax?

Season 1: Episode 35
May 12, 2020

Photo by Tuomas Luukkonen licensed under CC BY-SA 3.0

Politicians have turned their focus to restarting the economy, but doing so depends on public health workers stopping the spread of the coronavirus. And they are missing one critical tool: data.

Listen to the full episode below, read the transcript or scroll down for more information.

Click here for more of our coronavirus coverage.

The Problem: Outdated and Underfunded

The health care industry has spent billions in public and private dollars over the last decade to modernize its data infrastructure, but public health has been left behind. While most hospitals now have electronic health records, public health departments are still relying heavily on phones and faxes to fight the spread of the coronavirus.

A lack of rapid and reliable access to data has public health officials struggling to do the testing, tracing and surveillance work required to safely reopen our country.

The recent CARES Act did include $500 million to fix these flawed systems, but experts worry it is too little, too late.

The Evidence: Data Dysfunction

These data deficiencies were documented long before this pandemic. One study done a decade ago showed lab results sent to public health departments were missing demographic information at alarming rates. On average, patient phone number was included on just 40% of results and race on about 53%.

Current data are harder to come by in the midst of a pandemic, but some more recent reported statistics include:

0 %
of hospitals say they are unable to share data electronically with public health agencies¹
0 %
of COVID-19 test results are missing race or ethnicity data²
0 %
of COVID-19 test results are missing phone or address for the infected person²
¹Forthcoming paper from A Jay Holmgren, Nate C Apathy, and Julia Adler-Milstein.
²Data from select regions shared by the Council of State and Territorial Epidemiologists.

The Impact: The Disease and the Decisions

This problem is not new, but its impact is felt much more acutely during a public health crisis, when as epidemiologists like to say, “The data must move faster than the disease.”

Slow and unreliable data is hampering our coronavirus response in three key ways:

Testing & Tracing

As soon as health departments receive a positive test, their goal is to track down the infected person as fast as possible and find out who else they may have exposed. Delays in finding a person can lead to additional virus spread.

Surveillance

Health departments use a variety of data, such as emergency room visits, to look for signs of new or worsening hotspots. Without real-time access to those types of data, health departments may be slow to target resources in the right areas.

Decisions & Communications

Policymakers often consult public health experts on decisions such as reopening schools or ramping up testing. A lack of robust and real-time data can leave officials flying blind. It can also undermine the credibility of the data officials report to the public.

Possible Solutions: Policy, Tech and Funding

The federal government does have some longer-term fixes underway, such as new CMS and HHS rules mandating more data sharing, but they will take years to make a meaningful difference. In the meantime, experts recommend focusing attention on shorter-term fixes:

Policy

Clarify aspects of HIPAA and other policies that are causing confusion among health care entities about how much data to share, when and with whom.

Tech

Make better use of existing technology. One promising pilot enables hospitals' EHR systems to automatically send data to health agencies as soon as certain symptoms or tests appear in a patient record.

Funding

Include additional funding in the next stimulus package. The amount in the CARES Act was only about half of what leading public health groups requested, and it is intended to last five years.

Episode Resources

Select Research and Reports on Public Health Data and COVID-19:

Data Interoperability and Exchange to Support COVID-19 Containment (Farzad Mostashari and Mark McClellan; Duke Margolis Center; May 2020)

Federal Health Advisory IT Committee (HITAC) Meeting on COVID-19 (April 15, 2020)

The Urgent Need for a 21st Century Data Superhighway (Council of State and Territorial Epidemiologists)

AMIA Electronic Case Reporting Presentation (April 28, 2020)

HIPAA and COVID-19 (HHS, 2020)

Episode Credits

Guests:

Janet Hamilton, MPH, Executive Director, Council of State and Territorial Epidemiologists

Richard Danila, PhD, Deputy Epidemiologist, Minnesota Department of Health

Katie O’Donnell, Public Information Officer, Larimer County Department of Health and Environment

Arien Malec, Senior Vice President, Change Healthcare; ONC Health IT Advisory Committee member

Julia Adler-Milstein, PhD, Professor of Medicine and Director of the Center for Clinical Informatics and Improvement Research, UCSF

The Tradeoffs theme song was composed by Ty Citerman, with additional music this episode from Sample Focus, Broke for Free, Unheard Music Concepts and Blue Dot Sessions.

Additional thanks to:

Ben Moscovitch, Zach Bernstein, John Kansky, Shaun Grannis, Mary Hill, Hector Gonzalez, Ganesh Persad, Allison Culpepper, Mariann Yeager, Debbie Condrey, John Loonsk, Melora Simon, Hong Truong, the Tradeoffs Advisory Board…

…and our stellar staff!