The White House is encouraging researchers to copy government data on Obamacare out of concern that President-elect Donald Trump might hit the delete key when he takes office.

Spooked by Trump's rhetoric and pledge to repeal Obamacare, several dozen independent researchers are racing to download key health care data and documents before Jan. 20. They say they began the effort on their own, and then got a boost from Jeanne Lambrew, the White House's top health reform official, who also sounded alarms the new administration might expunge reams of information from public websites and end access to data, researchers told POLITICO.


Lambrew and the White House declined to comment. "We are not going to speculate on what sort of policies President-elect Trump may choose to prioritize or pursue," said a representative of the Department of Health and Human Services.

Capturing data on how consumers use and pay for health care is a central pillar of the Affordable Care Act — crucial not only to administering and measuring the law's success, but also for any future efforts to reform the $3 trillion industry.

The efforts by researchers at some of the nation’s most prominent think tanks reflect the extraordinary anxiety not just of civil servants, but also of supporters of the ACA and other Obama-era policies as they brace for an administration that has pledged to dismantle those laws and has already cast doubt on the veracity of government data, for instance, regarding the unemployment rate.

Having information on every facet of Obamacare is essential, researchers say, because Democrats may need it to build their case for why large pieces of the controversial law should be left intact. They say the data may be helpful for devising other reforms, including an eventual Obamacare replacement and, at minimum, should be preserved as part of the historical record.

The Trump transition team did not respond to requests for comment on how the next administration would approach access to Obamacare data. But Republican policy wonks dismissed researchers' concerns as paranoia.

"Suppressing data in this era of 'open everything' is not a good idea and inevitably comes out," says Tevi Troy, the head of the American Health Policy Institute and a former HHS official in the George W. Bush administration. "From what I know from working in government, I’m skeptical."

The Centers for Medicare & Medicaid Services "right now isn't providing enough information" about the costs of Obamacare, said Brian Blase of the conservative-leaning Mercatus Center. "I hope the Trump administration provides a lot more."

Given the sensitivity around the transition and the political fight around Obamacare, most of the researchers participating in the copying effort declined to comment on the record. They say they are downloading data, documents and regulatory guidance on Obamacare enrollment, premiums and other topics, by copying publicly available reports and also those from closely held government databases.

"Talking about it now sounds pretty paranoid," one said. "And talking about it publicly is a pretty good way to end up on the sh-- list."

Researchers say their fears have grown since seeing reports that climate researchers — working on policies that have also become highly politicized — are copying their own data sets to ensure their continued availability. Anxieties also increased after the Trump transition team asked the Energy Department to identify employees who worked on President Barack Obama’s climate initiatives. Even though the agency declined to share those names, and the Trump team disavowed the effort, researchers' concerns snowballed.

Several told POLITICO that they were unnerved by candidate Trump's falsehoods about the economy and the health care law, and they're worried that agencies will feel pressure to fall in line. That's why they've launched their proactive effort to stockpile health data and are keeping tabs on their combined progress.

"Some groups are downloading pieces, with the hopes that collectively we'll be able to download the important stuff," said one researcher.

Researchers who have pre-existing data-use agreements with Medicare and Medicaid are pulling specialized information about topics like Obamacare-related enrollment. Others are concentrating on downloading key guidance to implement health reforms and other documents that might be necessary for the historical record.

"We're not worrying about redundancy right now as much as making sure we have what we need," said Judy Solomon of the Center on Budget and Policy Priorities, which doesn’t have an agreement that allows it to obtain specialized data.

There are multiple levels of concern, researchers and former HHS officials say. Transitions are inherently disruptive under any circumstances. Research begun under one president can be discontinued or simply fall through the cracks with the next.

Some efforts get deliberately ignored if they don't line up with the new leader's priorities. One ex-staffer recalls paying contractors to conduct research under the Clinton administration but not securing approval to publish those findings after the Bush administration took office in 2001.

"The change in the administration creates uncertainty," acknowledged Genevieve Kenney of the Urban Institute, who wouldn't comment on whether her organization is stockpiling data.

There's also no real standard for what should stay online and which sites and services will be maintained, given the explosion of data since the most recent presidential transition, in 2009.

But this transition could have far-reaching consequences for HHS's data integrity, given the vehement opposition by Trump and his lieutenants to Obamacare and their challenges of official government data.

"It's a serious concern," said a former HHS researcher, who experienced the Clinton-to-Bush handoff in 2001 and believes this one will be significantly worse. "We've seen during Trump's campaign, and at the beginning of the transition … a lot of statements where the distinctions between rhetoric and fact become very loose."

Researchers are also rushing to capture data put out by the new offices created under the health care law to regulate health insurance and test reforms, both of which could be swept away by Obamacare repeal. They're especially concerned that the office of the assistant secretary for planning and evaluation — essentially the in-house health care policy shop — will stop publishing many reports under the Trump administration.

Another problem: CMS is losing its top data evangelist. POLITICO reported last week that Niall Brennan, the agency's chief data officer, would leave next month — the highest-profile departure among career staff ahead of the Trump transition. Brennan was instrumental in launching open-data initiatives, and researchers worry his departure is a bad sign for the future of agency transparency.

Meanwhile, this administration is trying to get as much data as possible into the hands of researchers before the transition is complete. One researcher said her Freedom of Information Act public records request was finally filled this month after more than two years. The White House also is pushing out a series of reports — among them a 100-page report on Obamacare's economic impact and a study of Obamacare enrollment — that officials touted as among "the most extensive [data sets] on ACA ever produced."

But the problem isn't just answering the questions about health care reform that lawmakers and researchers have right now. Researchers say they'll need to solve the inevitable questions that will come up in the months and years ahead, especially with some Obama-era health care reforms, like special enrollment periods, not producing results until the Trump administration takes over.

"It's not just keeping the data we have," said CBPP's Solomon, "but maintaining an environment where policy can be formulated based on the data that we continue to collect."

Researchers said they hope, regardless of the Trump administration's approach, that they’ll find champions for rigorous data-collection and dissemination on both sides of the aisle.

"Speaker [Paul] Ryan is really a strong advocate for evidence in policymaking," the Urban Institute's Kenney said. "There's been bipartisan support for bringing evidence to bear on policy."

Meanwhile, several researchers worried their decision to be secretive has hurt the effort, because they eschewed open meetings or inviting suggestions. "The hardest part is thinking about what all of the [documents] are" that we need, said one.

"Should we set up a mirror website?" asked another. "I wish someone would just tell us what to do."