Top 3 Impacts of Trump's Health Data Purge

Health experts say the country's ability to combat new infections and chronic health conditions will be hampered by the Trump administration's attempts to limit access to federal health data.

The federal agency scrubbed healthcare data from its website in January to comply with President Donald Trump's executive orders regarding gender and gender. Diversity, equity, inclusion; and foreign aid.

Many extensive, large-scale national health surveys, indexes and dashboards went offline on January 31st after Trump signed the executive order. These data sources inform research, policy decisions and medical decisions.

By February 2nd, several landing pages were returned online with warning messages that the content of the website has been changed or will be changed to comply with the executive order. On February 11, US District Judge John Bates directed US District Judge John Bates to recover certain data on the Trump administration, HHS, Centers for Disease Control and Prevention, and the Food and Drug Administration websites, noting that there is no access to treatments with such data impaired.

The ruling follows a letter sent to the director of the White House Business and Budget Office, where nearly 80 members of Congress advocate for the Trump administration, and restores health data that lawmakers call “work crucial for government accountability, public and private sector research, and carried out by businesses and nonprofits across the country.”

Learn more about the biggest impact of health data purges.

Decreased ability to understand and control infectious diseases

In the complaint, the doctor said the US order prevented doctors from accessing important CDC resources to deal with the outbreak of chlamydia.

“In the short time when important web pages have been removed from major public health agencies' websites, our members see firsthand how dangerous it is to practice medicine without any important clinical information,” the chairman of the American Physicians' Board of Directors said in a statement on the temporary restraining order.

Health data purges also prevented access to key tools used to respond to infectious diseases.

During the suspension, the CDC temporarily removed access to Atlasplus, an interactive tool that many public health experts, policymakers, providers and others rely on to respond to the outbreak.

Atlasplus features nearly 20 years of surveillance data on HIV, viral hepatitis, sexually transmitted diseases and tuberculosis, allowing users to create customized tables, maps and charts. Users can also view social determinants of health along with surveillance data for each disease, making it easier to determine which groups are the most vulnerable.

Providers say it is essential to ensure reliable access to such information.

“The removal of datasets and guidance from the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) websites puts patient health and wellbeing at risk, making it more difficult for physicians to provide quality care in order to comply with the president's recent executive order.” “These resources are more than just academic references. They are essential for real-time clinical decision-making in hospitals, clinics and emergency departments across the country.”

It is unclear exactly how changes in the Trump administration will affect future access to infectious diseases and related data, but long-term outcomes can be disastrous if there is little information about which groups are most vulnerable to infectious diseases.

Limited access can hinder the ability to combat public health emergencies, such as the Covid-19 pandemic, which disproportionately affect certain groups, such as the elderly.

State and local public health agencies are particularly concerned as they rely on federal agencies to fund, data collection and aggregation to help public health professionals identify the cause of infectious disease outbreaks.

If infectious disease-related data is “siloed” in 50 states – Or “even worse” 3,300 local health departments – Polan said it is difficult to pinpoint the cause of the outbreak, including the ongoing outbreak of tuberculosis in Kansas and the outbreak of measles in Texas.

In some cases, it can be difficult for public health officials to identify whether the disease is still occurring in place of isolated incidents, such as during an E. coli outbreak.

It hindered the ability to understand and control chronic conditions

The Trump administration has also temporarily removed access to the CDC's behavioral risk factor surveillance system, the world's largest, continuous health research system. It provides detailed information on obesity rates, access to breast cancer screenings, vaccination rates and share of people with existing conditions.

According to KFF, data is collected in all states, which is beneficial for understanding health issues in small population conditions and rural areas.

The CDC also temporarily removed access to youth risk behavior surveys that track behaviors such as smoking and exercise habits that may affect high school students' health and social outcomes.

“Recently, YRBS asked respondents about their sexual orientation and gender identity, and the data have been used to highlight mental health disparities among LGBTQ+ high school students.

Federal officials have restored access to BRFSS, including sexual orientation and gender identity data, but some of that information may be lost or collected, making related research difficult or impossible.

The message on the BRFSS homepage states, “The CDC website has been changed to comply with President Trump's executive order.” Additionally, the Trump administration has posted a message on the homepage of the Youth Risk Surveillance System, which states that “information on this page that promotes gender ideology is separated from the unchanging biological reality of two genders, male and female.”

Without accurate information about who is sick, where and where, implementing population health management and value-based care initiatives that improve health outcomes and cost reductions can become increasingly difficult for providers and payers.

“We're going to waste more money,” Afa's Polan said. “People will be harmed.”

Worst health policies and trust in health care has declined

Many experts worry about the potential to limit access to the types and amounts of health-related data collected by federal agencies, leading to worsening health policies and reducing confidence in the U.S. health system.

The federal government should gather as much health-related data and information as possible to ensure policymakers are well positioned to develop and implement effective health policies, says Brian Castrucci, president and CEO of the De Beaumont Foundation.

Decisions regarding the interpretation and use of that information should occur during the policy making process, not during data collection, Castrucci said.

If the Trump administration halted collecting or sharing certain data for ideological reasons, “the measurement question became a policy question,” and “biasedness was burned from the start,” Castrucci said.

“Let policy makers make policies,” Castrucci said.

During the Covid-19 pandemic, the first Trump administration directed the health system to teletracking technology, a private company, instead of the CDC, to report Covid cases and intensive care units' capabilities. The result was a loss of real-time Covid data and widespread confusion. The administration was later attacked for improperly awarding a federal contract to a company that had ties to the Trump organization.

“The legacy of Covid is politicizing basic information,” says Castrucci. “I couldn't even get a case count.”

Further politicization of health-related data can result in permanent and potentially irreversible damage.

“When our belief in the truthfulness of data depends on who is sitting in an oval office, we lost our sense of information, data and objectivity,” says Castrucci.