Several years ago, public health officials in West Virginia observed a troubling trend far too many pregnant women in their state as compared to others, were smoking, jeopardizing their health and the well-being of their newborns.

This observation was made possible by the Pregnancy Risk Assessment Monitoring System, or perhaps a federally supported surveillance program that gathers detailed population based data from women before, during, and after pregnancy. The preservation of public data sets like prams, is the topic of this week's health care triage.

In response to the observation that so many pregnant women were smoking. West Virginia implemented several targeted interventions, the impact of which was immediate and far reaching. Smoking rates among pregnant women dropped dramatically, from 25% in 2018 to about 10% in 2022.

Consequently, fewer infants were born prematurely and fewer babies died before reaching their first birthday. But now, prams data are at risk. The infrastructure supporting them at the national level has been dismantled.

The implications of those changes remain unclear, but researchers report that multi-state data are no longer available. Instead, researchers must request data state by state, navigate individual data, use agreements, and independently clean and harmonized data sets a burdensome and duplicative process that used to be handled once by the federal government and then shared with all. This shift makes the data harder to use and makes things far less efficient.

It makes it harder to evaluate policy impacts, too. Without a unified data set, states lose a key tool for learning from each other and for evaluating the impact of their own policy decisions in a national context. These concerns extend far beyond maternal health data.

In February 2025, The New York Times reported the removal of more than 8000 pages from federal websites, including content on vaccines, veterans services, hate crimes and health research. a federal judge issued a restraining order requiring restoration of some pages after advocacy groups filed suit. However, compliance has been inconsistent, determining exactly which data sets or resources have been permanently deleted, quietly altered, or only partially restored is challenging. Some data sets have reappeared, with disclaimers indicating they were reinstalled under the court order.

Others seem to have been brought back without any explanation, raising questions about their accuracy Even more remain inaccessible because there are no longer staff assigned to manage or approve access requests, even when request forms are available. Efforts to remove, restructure, or completely eliminate public health information from federal websites undermine the essential infrastructure that scientists, clinicians, health policymakers, and community leaders rely on daily to achieve better health outcomes. Consider how essential the CDC managed programs data have been when programs was launched in 1987.

The infant mortality rate stood at ten deaths per 1000 live births. By 2022, that rate had dropped to 5.5, reflecting progress that would not have been possible without the ability to analyze consistent cross state data over time. PRAMS isn't the only data source that's been compromised recently.

Access to information from the President's Emergency Plan for Aids relief, or PEPFAR enables smarter, faster decisions in HIV care. Now, those data have been removed. Many of the affected data sets, such as reproductive health, youth behavior, gender identity, and racial and ethnic inequities pertain to populations that experience different outcomes in our health systems.

The Youth Risk Behavior Surveillance System provides trend data that have helped identify increases in youth nicotine use and mental health issues beyond merely observing the trend. The data were used to develop evidence based interventions for vulnerable youth populations, particularly LGBTQ teens and teens of color. Similar to prams, these data have been restored with a disclaimer that does not clarify the completeness or accuracy of the restored data set.

Changes to the Health Resources and Services Administration Health Resource Files, which provide information on health infrastructure and socioeconomic characteristics for each county in the United States, have made it more difficult for providers to assist patients with opioid use disorder, especially women. The removal of resources specifically focused on LGBTQ patients means that clinicians can no longer access gold standard care guidance for their patients. Decades of research show LGBTQ youth aren't inherently more at risk for health issues.

Instead, they are made vulnerable due to persistent social stigma, marginalization, and a lack of supportive environments. Removing the data doesn't remove the reality. It only undermines our ability to respond to it in a way that's efficient, targeted, and accountable.

In each of these cases. The core issue isn't just the specific population that is affected. It's that everyone loses.

When we removed the tools needed to monitor needs, improve performance, and distribute resources fairly. These data empower communities to define and solve their own problems, and help policymakers avoid waste, identify what works, and ensure no one is inadvertently left behind. Engaged, informed citizenship is vital.

Both now and in the future. I encourage all of you who are passionate about data integrity and scientific transparency to stay vigilant, informed and prepared to express the invaluable benefits we collectively gain from rigorous, accessible and impartial health services. Research and evidence.

Our collective commitment to protecting public health data transcends political divides. Data are more than just numbers and charts. They represent empowerment, protection and hope.

We must defend the data that defends us all. Hey, you enjoyed this video. You might enjoy many of our videos that show how much we rely on these big data sets, including this compilation on the benefits of exercise.

We'd really appreciate it if you'd like this video, and if you'd subscribe to the channel down below. And if you consider going to Patreon.com, slash health care triage where you can help support the show to make it bigger and better. We'd especially like to thank our research associates Edward Liljeholm and Joshua Crow, and of course, our surgeon, Admiral