In this edition of the Situation Report, we highlight troubling developments affecting federal health data transparency and leadership stability at the Department of Health and Human Services (HHS) and the National Institutes of Health (NIH). A new study reveals that many government health datasets have been changed without public notice, raising concerns about scientific integrity and the impact on research. Meanwhile, high-level staff dismissals at HHS and the sudden removal of NIH advisory committee members disrupt ongoing work and planning. These changes pose real challenges for researchers, clinicians, and public health professionals. If your work has been affected by these disruptions, we invite you to share your story by August 8 to help us advocate for restoring access and transparency.
In today’s issue:
- Study Reveals Substantial Changes to Over 100 Gov’t Health Datasets, Most Unlogged
- House Appropriations Committee Releases Funding Levels, Rejects Trump Priorities
- Shakeup at HHS: Top Aides and NIH Operations Chief Dismissed Amid Turmoil
- NIH to Rescind Dozens of Advisory Council Appointments, Disrupting Years of Planning
- Inside Access: AcademyHealth Members Debrief Recent Breaking News, Ongoing Advocacy
- CMS Proposes Medicare Rules to Align with Reconciliation Bill
- Senate Hearing Elevates Anti-Vaccine Narratives, Drawing Concern from Public Health Experts
Study Reveals Substantial Changes to Over 100 Gov’t Health Datasets, Most Unlogged
More than 100 government health datasets were substantially altered, most without any public notice, this past spring, according to a study in The Lancet. The journal’s investigation of metadata gathered from HHS, CDC, and the VA reveals that half of the 232 datasets studied were substantially altered, most without logging or indicating changes in official change logs. Investigators used the comparison feature in a word-processing program to highlight textual differences between archived copies of the datasets and datasets with a modification date between January 20 and March 25, 2025. Changes to these datasets include substantial wording changes, changes that define the data itself, like column names or category labels, and narrative descriptions or tags that sit above the data table. For example, 93 percent of the datasets changed the word “gender” to “sex.” Researchers note that this wording change, in particular, may have been politically motivated, given the Presidential directive to remove “messages that promote or otherwise inculcate gender ideology.”
Undocumented changes can impact researchers’ ability to compare data longitudinally, impede replication attempts, invalidate statistical models, or even make detecting trends impossible. This study comes at a time when researchers are already feeling the impacts of the current administration’s removal and alteration of public health data. AcademyHealth has joined a federal lawsuit that seeks to restore access to these important public health data . If you or your colleagues have been affected, please share your experience by August 8 to help us show real-world harm and push for the restoration of these vital resources.
Share your story here or you may reach out directly to AcademyHealth’s Chief Strategy Officer Kristin Rosengren at Kristin.Rosengren@academyhealth.org.
House Appropriations Committee Releases Funding Levels, Rejects Trump Priorities
The House Appropriations Committee released updated subcommittee allocations for FY26. These allocations provide a ceiling for each subcommittee to fill with funding. While this does not provide information about what priorities will be funded, it does give us a perspective into what to expect. The level for the Labor-HHS bill is $184.49 billion, approximately $1.3 billion less than the discretionary appropriations included in the FY 2025 Labor-HHS appropriations bill. This is less than a one percent cut, a far lower cut than the Republican majority has called for in recent years. Overall, the Committee is calling for approximately $150 billion more in nondefense discretionary funding than what the President’s Budget Request asked for, a notable rebuke across Republican policymakers. Labor-HHS Subcommittee Chairman Robert Aderholt (R-AL) told reporters that he does not expect to release and mark up this bill until September, acknowledging that the self-imposed priority of moving all 12 appropriations bills before Congress leaves for August was unworkable. The current fiscal year ends on September 30, and Congress needs to pass a continuing resolution or appropriations legislation by then to prevent a government shutdown.
Shakeup at HHS: Top Aides and NIH Operations Chief Dismissed Amid Turmoil
U.S. Health and Human Services (HHS) Secretary Robert F. Kennedy Jr. abruptly fired multiple of his top aides this week, including Chief of Staff Heather Flick Melanson and Deputy Chief of Staff for Policy Hannah Anderson. The National Institute of Health (NIH) chief operating officer, Eric Schnabel, was also let go this week. Although the details remain unclear, individuals familiar with the top aid firings said that Secretary Kennedy had lost confidence in them. As for the senior NIH leader, the news comes amid an investigation into a contract that could have benefited his spouse, although it is also not clear yet what sparked the inquiry. The contract, worth 3.3 million dollars and aimed at supporting work on autism, was awarded to a Louisiana company that named Eric Schnabel’s wife, Trish Schnabel, as one of its key staff. An HHS spokesman confirmed White House Liaison Matt Buckham would fill the HHS chief of staff role; however, other key senior positions remain vacant for now as the department faces mounting criticism over recent vaccine policy changes and other health priority announcements.
Leadership instability at HHS and NIH can slow critical health research, disrupt funding pipelines, and shift federal priorities in ways that directly affect the future of health services research. Health services researchers should stay alert to potential shifts in funding, oversight, and policy priorities and speak up to protect the role of evidence in federal decision-making.
NIH to Rescind Dozens of Advisory Council Appointments, Disrupting Years of Planning
In a highly unusual move, the NIH will disinvite dozens of scientists who had been vetted and nominated under the Biden administration to serve on NIH advisory councils, according to Nature. These councils play a critical role in final decisions on research funding, and the sudden removal is expected to leave many panels understaffed and lacking key expertise. At the National Human Genome Research Institute, for example, only six of 18 council seats will remain filled. The process to find replacements must now begin again from scratch.
Internal communications obtained by Nature show that NIH staff have been instructed to select new nominees who align with the Trump administration’s priorities. Some staff have begun reviewing social media to screen for candidates who have expressed support for diversity, equity, and inclusion (DEI) efforts or criticized Trump—criteria not previously used in peer reviewer selection. The disinvitations reverse a time-intensive process that typically takes years and raise serious concerns about politicization of federal science funding.
Inside Access: AcademyHealth Members Debrief Recent Breaking News, Ongoing Advocacy
AcademyHealth hosted a membership town hall on Wednesday, bringing together more than 60 members to focus on tackling current policy and funding challenges while also building a stronger community. Members engaged directly with AcademyHealth’s President and CEO, Aaron Carroll, and Director of Advocacy, Josh Caplan, raising questions and concerns surrounding the future of federal funding for health services research and data accessibility. The town hall included updates on recent AcademyHealth initiatives to promote evidence-based health policy, including letters to Congress in defense of USPSTF and AHRQ funding structures and recent developments covered in the twice-weekly Situation Reports. Members expressed their gratitude for having a dedicated space to receive information about these important topics and learn about AcademyHealth's advocacy work. This town hall is part of the "Virtual Events for AcademyHealth Members" series, which includes monthly virtual gatherings with alternating formats. The next event is scheduled for August 27; details will be announced soon. Click here to become a member and gain access to these exclusive events.
CMS Proposes Medicare Payment Changes Following Reconciliation Bill
On Monday, the Centers for Medicare and Medicaid Services (CMS) proposed a 2.5 percent increase in Medicare physician payment rates for 2026, following the passage of the GOP-backed budget and tax reconciliation bill. This draft CMS regulation additionally includes two separate conversation factors for doctors, depending on whether they participate in alternative payment models. Alongside these billing changes, the 1,800-page sweeping proposal introduces a new adjustment that ties payments to how efficiently doctors deliver care, updates how practice expenses are calculated (with changes that may benefit office-based practices), and cuts some payments to providers connected with hospitals. Importantly, the rule would also make permanent many of the telehealth flexibilities first introduced during the COVID-19 pandemic.
These changes could influence how care is delivered and paid for across the country—impacting cost, access, and quality. Proposed cuts to health equity measures and reductions in hospital-based payments could deepen disparities, raising questions about who benefits—and who is left behind—as federal payment policies shift.
CMS is accepting public comments on the proposed rule through September 12. Health services researchers can offer valuable insights on how these changes may impact equity, care quality, research, and patient access.
Tips for submitting a strong comment:
- Be specific: Point to particular provisions in the rule and explain their potential impact.
- Use evidence: Cite relevant research or real-world data to back up your perspective.
- Stay constructive: Offer alternatives or recommendations where possible.
- Speak to your expertise: Share your on-the-ground experience or research focus—your professional perspective matters.
Submit comments electronically via Regulations.gov file code CMS-1832-P.
Senate Hearing Elevates Anti-Vaccine Narratives, Drawing Concern from Public Health Experts
On Tuesday, the first session in a series titled “Hearings to examine voices of the vaccine injured” was held in the Senate. Five anti‑vaccine activists and parents, including leaders from Children’s Health Defense, and two family members of children who passed away due to vaccine-preventable illnesses, testified at the hearing led by Senator Ron Johnson. The emotionally charged meeting featured personal stories of alleged vaccine injuries, including claims of vaccine-induced autism and sudden infant death syndrome (SIDS), garnering general sympathy from all committee members and witnesses. However, these accounts were challenged as anecdotal and unverified. Former CDC Director Tom Frieden and Senator Richard Blumenthal emphasized that while all health inventions carry some degree of risk, the available evidence suggests that existing vaccines are thoroughly tested prior to public initiation. They stressed that extensive studies have confirmed the safety of childhood vaccines and that the emotional testimonies should not overshadow scientific evidence.
The hearing, lacking any defined investigative or legislative direction, was seen by public health officials as part of a broader, politically-driven effort to undermine vaccine programs. Several of the claims made during the hearing had already been dismissed as unfounded in light of available evidence or had already been compensated through the Vaccine Injury Compensation Program. Experts warned that amplifying these unsubstantiated narratives without balanced scientific testimony risks eroding public trust in vaccines, jeopardizing public health gains.
Previous Updates
This is the latest in a series of Situation Report updates from AcademyHealth. You can find prior issues here.
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