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Patients as ‘First Responders’ — What COVID-19 Teaches Us About Timely Diagnosis

Feature Story

Pandemics
Health and Medicine

By Stephanie Miceli

Last update February, 3 2022

Getting tested for COVID-19 has become routine for many Americans over the past two years. Although long lines and shortages of testing supplies have made it difficult at times — most recently amid the surge of the highly transmissible omicron variant — having access to rapid tests can help people make safer decisions and get early treatment.

Recently, the National Academies hosted a workshop where experts explored lessons learned from COVID-19 that can help improve diagnosis within the U.S. health system.

Navigating Testing Availability

In the case of COVID-19, there is a delicate balance between testing frequently and testing appropriately.

It’s a waste of resources to “only test people one time to go back to school. That’s like buying a house and only testing the smoke alarm once,” said Michael T. Osterholm, McKnight Presidential Endowed Chair in Public Health at the University of Minnesota. Without consistent strategies for screening tests, many mild cases will be missed, and those individuals can continue to spread the virus to others.

Panelists also discussed barriers to timely diagnosis, including supply chain issues.

“There’s a clear difference between bottlenecking of test results, and not even having the test and needing to diagnose based on symptoms alone,” said Nicole Franks, associate professor of emergency medicine at Emory University. “We’ve had to ‘presume positive’ — treat people as if they have it.”

Although we can’t predict what’s next, we can embrace creative imagination in how we prepare.

Compared to the early days of AIDS or Legionnaires’ disease, when the new pathogens causing these infections emerged, the U.S. is doing better in terms of rapidly characterizing a new disease, said Osterholm. But ensuring broad availability of diagnostic testing in communities poses greater challenges. Although we can’t predict what’s next, he said, we can embrace creative imagination in how we prepare.

 “Labs are reporting shortages of testing kits, not just for COVID-19 but also for sexually transmitted infections and fungal infections. When shortages occur, we need to not only think about testing for that agent but also what it means for the entire universe of testing.”

Bringing Diagnostics to the Home

Despite issues of availability, the COVID-19 experience has demonstrated that some diagnostics no longer need to be confined to hospitals or centralized laboratories, said Rick Bright, senior vice president of pandemic prevention and response at the Rockefeller Foundation.

“I believe we’re reaching a point where there will be no need for people to leave the home to seek a [COVID] diagnosis. My dream is that when someone tests positive, they are contacted and get treatment delivered to the home, so they don’t have to go out and potentially expose someone who’s vulnerable,” said Bright. “But when we’re providing an at-home antigen test for SARS-CoV-2, why not test for the flu and other respiratory viruses at once? I envision multiplexing — ‘one swab does the job.’”

At-home diagnostic tests aren’t new, Bright added. There are at-home tests for sexually transmitted infections such as HIV and chlamydia; phone apps that can detect ear infections and monitor your vital signs to detect illnesses; and disposable contact lenses that monitor for blood pressure. These diagnostic innovations and the paradigm shifts from the COVID-19 pandemic have helped to empower individuals to play a larger role in their health care.

“When people are empowered with knowledge, they can become a ‘first responder’ in their own home.”

“When people are empowered with knowledge, they can become a ‘first responder’ in their own home,” said Bright. “I don’t think people would get a test in the first place if they weren’t intending to reduce transmission in the community,” said Bright. “We could consider ways to incentivize information sharing.”

Effectively Capturing and Using Data

Panelists discussed some of the data infrastructure needs to achieve “diagnostic excellence.” Those include mechanisms for the aforementioned multiplex testing, disease surveillance, and genomic sequencing — especially to get ahead of new COVID-19 variants.

Many companies in the testing and sequencing space have proprietary information, which presents a predicament, said Bright. But if there was a common data architecture that allowed for sharing of the different types of data collected — whether from nose swabs, urine samples, or wastewater — we might be able to develop early warning systems before outbreaks occur.

If there was a common data architecture that allowed for sharing of the different types of data collected, we might be able to develop early warning systems before outbreaks occur.

“If we had this infrastructure, we could leave less data on the field and become much smarter,” he said.

Chau Trinh-Shevrin, a professor of population health at NYU Langone Health, spoke about the need to have clinical trials centered in communities, so we can actively reduce diagnostic- and treatment-related disparities.

“Most clinical trial sites are within major academic health centers, but it can be too much of a strain for people to travel to participate. We should think about building clinical trial infrastructure within federally qualified health centers, safety net hospitals, and community clinics.”

Imagining a Stronger System

After all the recent snags with diagnostic testing access and availability, now is the time to envision the system we want on the other side of the pandemic, urged Nicole Lurie, U.S. director and strategic advisor at the Coalition for Epidemic Preparedness Innovations. She cautioned there are several functions in the diagnostics ecosystem for which no entity is responsible.

“We need an end-to-end system that makes it clear who’s responsible for what. That will help us get diagnostics developed faster, more efficiently, and better so they can be made available more equitably.”

Nicole Alexander-Scott, former director of the Rhode Island Department of Health, emphasized that diagnosis in an ongoing process, and patients should be in every step.

The system for improving diagnosis, for COVID-19 and other chronic diseases, will only succeed if we can envision a better way. “And whichever path we go, we must include the community voice.”

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