Letter in regards to guidance on pandemic data
We, the undersigned organizations, are writing to request that the Office of Management and Budget (OMB) issue guidance to federal agencies to establish standard procedures for the collection, disclosure and maintenance of data related to the pandemic. Open and accessible data are essential for not only fostering the public’s trust in government decision-making, but also enabling oversight and accountability. We urge OMB to issue guidance immediately to ensure that the public have timely, reliable access to pandemic-related data as the government’s response and recovery efforts proceed.
The federal government’s failure to prioritize open and accessible data during the pandemic has exacerbated the coronavirus’ devastating toll and hindered response efforts. In the early months of the pandemic, when the country was still in a position to contain the virus, agencies failed to release national, disaggregated COVID-19 data—data that, when the courts eventually forced their release, revealed important epidemiological information, including the virus’ inequitable impact on Black, Latino and Tribal communities. Political influence in agencies has repeatedly slowed the release of data over the past year. For example, last summer the Trump administration forced hospitals to submit COVID-19 data to the Department of Health and Human Services (HHS) instead of the Centers for Disease Control and Prevention (CDC), which created new opportunities for political appointees to conceal coronavirus patient data, delay reporting, and worse, facilitate the politicization of data in an attempt to keep concerning trends from public view. Agencies’ numerous failures to release sufficient data in a timely manner forced the public, researchers and public health officials to look to non-government entities, such as The Atlantic’s COVID Tracking Project and Johns Hopkins University’s COVID-19 Dashboard, for data that the government should have been able to provide on its own.
OMB must use its authority to issue new agency guidance on data management to improve the country’s ability to respond to the pandemic, prepare for future health threats, and foster greater trust in government among the people. Guidance should require agencies to follow uniform disease monitoring and reporting requirements that enable identification of health disparities by multiple characteristics (including age, gender, race, ethnicity, sexual orientation, gender identity, disability status, and poverty level), and ensure that data are made publicly available in a timely manner. These efforts should prioritize data collection from particularly vulnerable populations, such as those in long-term care and correctional facilities, so government relief efforts can provide support tailored to communities’ needs, including equitable vaccine administration. Agencies should also make research available online, in machine-readable and non-proprietary formats, and freely accessible to the general public, to the extent permitted by law and with protections for individuals’ privacy, with only the minimal necessary restrictions upon their use.
OMB must also ensure that federal agencies are managing their data and records in compliance with the Federal Records Act, throughout the entirety of the government’s pandemic response efforts. OMB should remind agencies of their statutory obligation to properly schedule and preserve government research and data, and provide advance public notice before removing or altering significant information. Should an agency fail to do so, OMB must create an enforcement mechanism for noncompliance that provides for disclosure of the improperly withheld information and its restoration. Without this transparency, the public will not have reason to support further economic relief efforts or trust in government recommended vaccines—a scenario that could extend the pandemic and its devastating impact even longer.
We applaud the actions that President Biden and OMB have already taken to address some of these requests, but the issues detailed above urgently need implementation. As a recent report by the Massachusetts Institute of Technology said, “Without good data, planners can’t plan, epidemiologists can’t model, policy makers can’t make policy, and citizens don’t trust what they’re told.”  Poor data management and access inhibited the country’s ability to effectively respond to the pandemic. We urge you to issue and implement guidance to federal agencies to facilitate better data practices that will help us bring an end to the country’s suffering as soon as possible.
For further information, please contact Hannah Bassett at [email protected]
Citizens for Responsibility and Ethics in Washington (CREW)
Digital Democracy Project
Government Accountability Project
Government Information Watch
Jacobs Institute of Women’s Health
Project On Government Oversight (POGO)
Public Employees for Environmental Responsibility (PEER)
National Center for Health Research
Open The Government
R Street Institute
Society of Professional Journalists
Union of Concerned Scientists