Access to Information, including around government supplies, research, spending, and health data related to COVID-19 will result in better preparedness for future pandemic or other crises that impact the health of the population.
- The Problem
- Recommendations for Action on Day One
- Recommendations for Short-term Action (First 100 Days)
- Recommendations for Long-term Action
- Recommendations for Legislative Action
When the novel coronavirus began threatening communities across the United States, the administration failed to provide clear or accurate information about its severity or about pandemic response plans or capabilities. The administration improperly classified COVID-19 meetings, dangerously limiting the public’s access to critical public health information. When demand for medical supplies and personal protective equipment was at its peak, the government did not have clear or readily available information about strategic national stockpile supplies or how states could acquire them. Limited transparency around pandemic-related supplies, research, spending and health data has endangered the physical health of communities across the country leaving the public unable to make informed decisions about how to protect their health. Similarly, the distribution of funds under the economic stimulus package suffered from too few accountability mechanisms, leaving the program ripe for waste and limiting the publics’ understanding of the efficacy of the economic intervention. More recent claims that the administration is moving “warp speed” to develop safe and effective COVID-19 vaccines and treatments leave the public unsure if they will be safe. Having repeatedly ignored and buried evidence of the impact of COVID-19 while inappropriately endorsing ineffective treatments like hydroxychloroquine actions that attempted to create political gain but offered minimal added protection to the public against the coronavirus. Without transparency around supplies, research, spending or health data, the public will not have reason to support further economic relief efforts or trust that government recommended vaccines and treatments are in fact safe—a scenario that could extend the pandemic and its devastating impact even longer.
- Declassify COVID-19 information and commit to keeping future meetings and documents related to the pandemic response unclassified.
Records of meetings, stockpile formularies, and policy and legal rationales used to distribute stockpile supplies should be declassified. Unnecessary classification of meetings addressing the pandemic prevented key experts from participating in conversations or receiving materials regarding health and safety information. Inappropriately classifying these discussions or documents hinders the government’s ability to respond effectively and get key information to the public.
- Launch a commission to understand and learn from the United States’ pandemic response.
The commission should be in the style of the National Commission on Terrorist Attacks Upon the United States, also known as the 9/11 Commission, and should review the chain of command when dealing with a public health emergency; the fastest ways to leverage resources and scale up response; the capacity of the nation’s health system; and the spread of disinformation. The commission should put forward recommendations to improve the country’s ability to respond to the next pandemic.
- Call for the Food and Drug Administration to release key data, including data on medications and vaccines related to the COVID-19 pandemic.
The Food and Drug Administration should release information on who it is funding and what the funding is for. Drug manufacturing companies should provide details on their supply chains, including where drugs are coming from, where there is a shortage, and how actual or potential shortages can be addressed. Federally funded science conducted by companies should be publicly available to the maximum extent possible. That includes study designs; summary data statistics; results (both positive and negative) of experiments and trials; and proposed next steps. For any drugs or vaccines for which an emergency use authorization request is approved by the Food and Drug Administration, that agency should release all research data supporting the request at the time of approval (while protecting patient privacy). Likewise, when the Food and Drug Administration approves a drug or vaccine for COVID-19, the agency should provide an explanation of the evidence (including all data, when not infringing research participant confidentiality) on which it based decisions regarding the safety and efficacy of the products. Likewise, when the Food and Drug Administration approves a drug or vaccine for COVID-19, the agency must immediately release at the time of approval all data regarding the safety and efficacy of the products. The Food and Drug Administration should disclose the basis of medication shortages due to the coronavirus pandemic, which could include any shortage of ingredients.
- Require the Department of Health and Human Services to make publicly available all contracts, funding arrangements, and other agreements related to COVID-19 treatments and vaccines.
- Extend data collection on the pandemic’s economic impact.
The president should direct the U.S. Census Bureau to continue to extend the Household Pulse Survey and expand its outreach to include offline surveying, to avoid potentially skewing the survey’s results to only populations with internet access.
- Direct agencies to improve tracking of pandemic-related spending through USAspending.gov.
These improvements should:
- Establish a search filter that would allow users to more easily find pandemic awards.
- Ensure that agencies report direct assistance and loans to individuals, which should be aggregated to protect privacy in the smallest geographic areas possible, such as zip codes.
- Ensure that sub-award data from state agencies, contractors, and lenders receiving loan guarantees gets fully reported.
- Audit for data quality of award data and recipient reported data.
- Call for quarterly reporting from key agencies and departments working to address the pandemic and its economic impact.
The president should require the Office of Management and Budget and the Pandemic Response Accountability Committee to establish a process for collecting quarterly reporting from recipients of large awards, as mandated under the CARES Act.
- Direct agencies to establish standard procedures for the collection, disclosure, and maintenance of data related to the pandemic.
Agencies should be required 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 collected by the Centers for Disease Control are made publicly available in a timely manner.
- Make research and data that are digitally formatted and in the public domain available online, non-proprietary, 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.
- Provide full public access to government-supported publications’ metadata (such as unique, persistent ID; author(s) names with associated persistent identifier(s); title and abstract of article or paper; license information; journal or serial title with identifier (ISSN); and name(s) of funding agency or agencies with award numbers) without charge upon first publication.
- Encourage technical and legal interoperability to facilitate international sharing of government-supported scientific data, using compatible, publicly available, and open source formats.
- Collect data from settings such as long-term care facilities, correctional facilities, military bases and ships, and workplaces that have large numbers of cases, to ensure that areas of high transmission can be identified and addressed.
- Require Occupational Safety and Health Administration to report on the number and type of complaints related to insufficient safeguards against coronavirus transmission, and on the agency’s response to the complaints.
- Direct agencies to transparently manage coronavirus-related data.
The president should issue a memorandum requiring federal agencies to ensure management of scientific data throughout its lifecycle, to include compliance with Federal Records Act requirements related to records scheduling and preservation, and ensure scientific data is sufficiently described to enable its use. The memorandum should establish certain standards and requirements, including:
- Reminding 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 products.
- Instructing agencies to provide public access to all relevant scientific data to the greatest extent possible without compromising privacy, and creating an enforcement mechanism to ensure compliance with public access requirements. This should include remedies for noncompliance that provide for disclosure of the improperly withheld information and restoration of improperly removed information.
- Require agencies to release key COVID-19 research and development findings.
Agencies should disclose and make publicly available research, data aggregated sufficiently to preserve human participants’ privacy, and know-how for COVID-19 medical countermeasures developed with federal funding, including sharing with the WHO’s COVID-19 technology access pool.
- Ensure federal funding opportunities for COVID-19 initiatives or research follow reporting requirements.
All federal funding opportunities for clinical trials must register and provide result reporting at ClinicalTrials.gov, as is already required of National Institute of Health grantees.
- Ensure government loans awarded in response to the pandemic are properly reported on and tracked.
The president should call for specific reporting on Federal Reserve lending facilities. This reporting should apply to entities that receive the funds and capture what they are reporting out for staff on payroll, number of people employed, wages and benefits. The president should also direct the Federal Reserve to ensure that the loan award data that the Federal Reserve discloses closely matches the data structure and specificity of award data released through USASpending.gov.
- Support ethical data collection for technology-assisted contact tracing of COVID-19 transmission.
The executive branch should carry out privacy impact assessments and publicly disclose how tracing measures will protect privacy. The president should outline a base set of digital contact tracing technology features that protect privacy, with layers of additional capabilities that users can choose to activate.
- Establish fixed standards for when to invoke the Defense Production Act to mitigate shortages triggered by the pandemic.
Standards should address use for both preparedness and distribution of health resources. The president should also create a mechanism for real-time public dissemination of Defense Production Act orders.
- Establish an oversight entity for the strategic national stockpile.
This entity should independently assess the stockpile and report annually to Congress on the stockpile’s status and maintenance.
- Improve coordination between agencies responding to the pandemic.
The president should establish a mechanism to coordinate across agencies on global defense and biodefense topics to ensure that agency leaders are communicating with each other about potential and current threats. This mechanism should include, but not be housed at, the National Security Council. Technical leadership and coordination should be vested in the CDC. The White House should assure agencies are held accountable for fully cooperating on technical matters and policy as well as coordination with states and tribes.
- Call on Congress to reestablish and properly fund an Office of Technology Assessment to ensure Congress has access to technical experts to advise on the government’s response to the pandemic.
The Office of Technology Assessment, before its funding was cut in 1995, was an independent body of experts that utilized the peer review process, received bipartisan support, and succeeded in its mission to provide Congress with new and effective means for securing competent, unbiased information concerning the physical, biological, economic, social and political efforts of technological applications.
- Call on Congress to pass a bill creating a roadmap for providing health services in future pandemics.
- Call on Congress to ensure ethical data collection for technology-assisted contact tracing of COVID-19 transmission.
Any legislation should involve stakeholder input, be built for sustainability and include strong safeguards, be narrowly tailored to target the ongoing epidemic, and include an exit strategy. The resulting system for technology-assisted contact tracing should be non-punitive, non-discriminatory, auditable and fixable, voluntary, sustainably maintained, privacy preserving, and data minimizing. It should also have a measurable impact and minimal reliance on central authorities, and avoid data leakage or displacing non-technical measures.
Upon submission for regulatory approval or the grant of an Emergency Use Authorization, Congress should require pharmaceutical corporations to disclose disaggregated information regarding research and development costs, including the extent to which research and development was supported by the federal government, as well as manufacturing and other expenditures.
- Call on Congress to bolster transparency and oversight mechanisms of past coronavirus-response legislation.
These fixes should include measures to: strengthen protections for inspectors general, facilitate and expand the Freedom of Information Act, broaden whistleblower protections, promote court access for the public; narrow the CARES Actsecrecy exemption; fortify the CARES Actoversight mechanisms; disclose “secret law” (opinions from the Department of Justice’s Office of Legal Counsel) related to the pandemic; and fund congressional oversight.
- Call on Congress to report on the local-level distribution, implementation and economic impacts of relief funding triggered by the pandemic.
- Recipients of funding provide electronically accessible data on the economic impacts of that funding on employment, estimated economic growth, and other key economic impact factors. Data on businesses receiving federal funds should include demographics and size, such as average annual revenue.
- Collection of data on unemployment insurance payments (including if they are issued in a timely manner) and checks to households (to see if all eligible individuals received checks).
- Call on Congress to track state and local budget shortfalls following the economic uncertainty that began in March 2020.