Lisa M. Lee, associate vice president for research and innovation in the Division of Scholarly Integrity and Research Compliance at Virginia Tech, testified Wednesday to the U.S. House Committee on Science, Space, and Technology, Subcommittee on Investigations and Oversight regarding the critical issue of how the U.S. collects, uses, and communicates the meaning of health data during the global COVID-19 pandemic.

A public health expert specializing in infectious disease epidemiology and public health ethics, Lee was one of four witnesses at the virtual hearing on Data for Decision-Making: Responsible Management of Data during COVID-19 and Beyond. The hearing was held in effort to learn how the government should invest in public health infrastructure and disease surveillance that can serve through the COVID-19 pandemic and in the future.

Lee, who served as executive director of the Presidential Bioethics Commission during the Obama administration, explained there are three critical components of public health surveillance, dependent on one another, that best serve society.

“First, public health surveillance serves as vital health intelligence, without which we experience loss of productivity and life,” said Lee, also a faculty member in the Department of Population Health Sciences in the Virginia-Maryland College of Veterinary Medicine. “Second, public health surveillance is a set of activities, all of which must function both during and between public health emergencies. And, third, public health surveillance requires the public’s trust; without trust, the system fails.”

Contemporary public health surveillance is defined as the ongoing, systematic collection, analysis, and interpretation of health-related data with the a priori purpose of preventing or controlling disease or injury, or of identifying unusual events of public health importance, followed by the dissemination and use of information for public health action, according to research published by Lee.

She explained the important role that public health surveillance plays in providing critical — and often early — warning about health threats. State public health agencies, along with the Centers for Disease Control and Prevention and the World Health Organization, work together to anticipate health threats and respond quickly to mitigate them. Public health surveillance is an important tool that must work well at all of these levels both during epidemics and in times of good health.

“Similar to other types of intelligence, a well-functioning public health surveillance system provides health information that can anticipate and contain threats before they become catastrophic,” Lee said. “For a public health surveillance system to motivate effective public health action, it must be accurate, objective, and its findings clearly communicated.”

A successful system requires consistent investment in technical infrastructure and human resources, requiring a skilled and prepared workforce and regularly updated technology. Chronic underfunding of the U.S. public health system over the past decade has led to underinvestment in the public health surveillance system at all levels.

“Without consistent investment in a well-functioning public health surveillance system, governments are at risk for failing to meet their basic duty of caring for the health of their population,” Lee said.

Public health surveillance, especially for a highly lethal, novel virus, is a complex system that includes numerous, interconnected activities. In addition to careful planning and efficient system design, data must be collected and collated—which includes ensuring they are valid, complete, timely, deduplicated, and reliable.

A key characteristic of a public health surveillance system is the expectation that the data and findings are used to motivate public health action in the form of disease prevention, health promotion, and reduction of morbidity and mortality. Collection of health data in the absence of useful public action is not public health surveillance. 

"In the United States, we conduct public health surveillance on injuries, health-related behaviors, and over 70 conditions — some chronic, some infectious — as well as health events that might signal a new or unusual health threat. For each condition, we count a variety of what we call ‘sentinel events,’ which occur over the duration of an injury or illness. Each of these events tells us something different about the disease or condition in question," Lee said.

“Because an estimated 75 percent of emerging pathogens that cause disease in humans are spread from animals, it is increasingly important to include disease surveillance in animals as part of a fulsome public health surveillance system,” said Lee. 

Lee further explained that a disease surveillance system that includes both animal and human health, also called the One Health approach, has not been incorporated into the human public health surveillance system and if used, potential health threats would be known earlier and large scale loss of human health and life could be prevented.

Developing a useful public health surveillance system that measures the right sentinel events requires careful thought, planning, and coordination. In addition, it requires an understanding of the science and epidemiology of a condition and the specific data that will be needed for decision making.  

As a surveillance scientist who has worked over 30 years at the state, federal, and international levels, Lee said that surveillance scientists in state health departments and at CDC are most experienced and best positioned to think through these issues and design a system that will guide an effective, evidence-based response.

Lee explained that there are two types of information people most want to keep private — financial and health. And trust is especially important for the kind of data that public health surveillance collects, data about people’s health. 

“The public must trust that their data are being used to improve their health and for nothing else — not for the profit of a private company; not for law enforcement; and not to cause them social, reputational, or financial harm," Lee said. “To date, the U.S. public health surveillance system has proven to be especially trustworthy, with virtually no harm to individuals resulting from a breach of surveillance data.”

In her closing statements, Lee explained that political pressure resulting in reduced objectivity in both the collection and reporting of the data and awarding the data collection contract to a private, for-profit company, raises concerns. “When a private company takes on an inherently governmental activity like public health surveillance, there is a clear mismatch in mission. For-profit entities are driven to succeed in order to meet their obligation to ensure profits, as they should be. Public health surveillance, however, is not a profit-driven activity. This mismatch creates a great deal of mistrust.

“The American people have trusted the public health system to protect their communities from infectious diseases since before we were a country,” said Lee. “The foundation of that system, the eyes and ears of public health, is public health surveillance. Without a well-functioning public health surveillance system, we will be unable to meet our fundamental duty to care for the health of our nation. And if we cannot care for the health of our nation, we cannot care for our country’s prosperity. We cannot afford to fail.”

Watch a video of the full hearing.