Earlier this year, critical government datasets used by health researchers and economists were taken down from government websites following executive orders and memoranda issued by the Present Trump’s administration. This measure severely restricts public access to important information collected by the Centers for Disease Control and Prevention (CDC), U.S. Census Bureau, and other agencies about our country’s population and health particularly related to behavioral health, HIV and STIs, infant morbidity and mortality, sex and gender among many others. Although some of the tools and pages were restored within a few days, many datasets remain missing or have altered content on the website. This purge triggered a data downloading frenzy and raised concerns among many about the future of federal datasets and the uncertainty around access to public data. .
Public Data Fuels Innovation, Informs Decision-Making, and Generates Actionable Insights
In an age where information reigns supreme, federal datasets are important assets that fuel innovation and inform decision-making. Access to and the management of federal datasets have important implications for various sectors and impact activities that are critical for societal growth and well-being. Having open access to federal data can also have substantial productivity and cost savings for federal agencies. While individuals and political groups may have differing views on issues, access to open data is one area where both political parties must find common ground as it serves as the foundation for several key activities, including but not limited to:
- Evidence-based decision-making: Public data offers factual and non-subjective insights into societal challenges. By prioritizing data-driven decision-making, political leaders can collaborate on addressing issues based on evidence rather than ideology, thus promoting more effective policies and outcomes.
- Economic growth: Access to socioeconomic data, demographic information, and economic indicators can guide businesses, policymakers, investors, and non-profit organizations in making investment decisions tailored to the needs of communities, especially in low-population states and rural areas.
- Public health and safety: Public data is also important for safeguarding public health and safety. For researchers, federal datasets like CDC’s Behavioral Risk Factor Surveillance System (BRFSS)and HRSA’s Area Health Resource Files are vital for understanding health risks, practices, and care gaps. This information helps policymakers and health system leaders better prepare for emergencies, anticipate health care demand, and improve response and service delivery.
- Accountability and transparency: Public data offers transparency in public spending and policy outcomes, allowing citizens to assess government performance, hold governments accountable, and establish trust in public institutions.
- Innovation, revenue generation, and creation of jobs: Analyses have shown that federal health data alone adds over $300 billion to the economy each year. Federal datasets enable private sector companies, entrepreneurs, and non-profit organizations to develop new innovations, create jobs, and in turn, generate revenue.
Current Efforts to Preserve and Restore Federal Datasets
Following the news earlier this year, efforts to restore federal datasets tools garnered support from many in the research, medical, and journalism communities. The Association of Health Care Journalists along with a coalition of news nonprofits, journalism scholars, and others are working to conserve and protect important health information through the Health Data Preservation Project. Similarly, some of the physician groups, including the American Congress of Obstetricians and Gynecologists are now hosting clinical guidelines on their websites, like those on reproductive health. An international consortium of more than 810 academic institutions and research organizations, known as ICPSR, is also leading efforts to examine altered and missing content from CDC’s surveys and datasets. Complementing these efforts, Representatives Don Beyer, Kathy Castor, Scott Peters, Paul Tonko, and 75 of their colleagues wrote a letter to the Office of Management and Budget Director demanding the restoring of public access to federal datasets and data-driven tools removed earlier this year. These are just a few of the numerous monumental efforts dedicated to preserving and restoring access to federal datasets.
Prior to the recent purge, there had been a push to ensure the longevity and accessibility of federal datasets by many political leaders. For example, as part of the Evidence Act, the OPEN Government Data Act signed in 2019 by President Trump, requires federal agencies to publish their data in open, machine-readable formats for people to use. This legislation was championed by members of both parties and was passed with broad bipartisan support in 2018. This Act along with other similar initiatives such as the Federal Data Strategy highlights the bipartisan support for recognizing the value that open and accessible federal datasets provide.
How to Save the Future of Federal Datasets
Individuals and organizations across the political spectrum have a pivotal role in advocating for a better future for federal datasets. Here are some ways you can help restore and preserve federal datasets:
- Make the Case for Comprehensive Data: Advocate for accurate federal data such as demographic data on gender, race, ethnicity, and sexual orientation, as this information is essential to health and economic research, initiatives, and investments. Flag any changes to the variables using tools like Data Foundation’s SAFE-Track platform.
- Administer the Foundations for Evidence-Based Policymaking Act (the Evidence Act): Speak with your congressional representatives about the mandates set forth in the Evidence Act, which establishes that the federal datasets are a critical part of our national infrastructure and requires federal agencies to make their data more open. AcademyHealth’s Situation Reports often include sample scripts and advocacy toolkits for researchers to communicate and educate policymakers about what the evidence demonstrates.
- Engage with Policymakers at State and Local Level: Advocate for robust open data policies and for legislation that supports data preservation and transparency at state and local levels.
- Organize Educational Programs: Promote awareness about the importance of federal datasets by organizing seminars and campaigns for the general public. Equip individuals with the appropriate knowledge and understanding of this topic to engage their congressional representatives and advocate for access to federal datasets.
- Advocate for Investment and Funding of Federal Data: Sign your name (or organizations) to letters put together by national organizations advocating for agencies that are chronically underfunded to receive adequate funding to maintain their data repository.
- Form Coalitions: Join or build coalitions with individuals and organizations across various sectors to collectively champion open federal data initiatives.
Federal datasets are the common source that underlies scientific research, government accountability, and public good, and is fundamental to America’s economic growth and global standing, all of which are priorities that transcend political divisions. The U.S. government has a large supply of valuable data that has been paid for by American taxpayers. It is therefore imperative for both political parties to come together and commit to protecting and restoring federal datasets that can promote growth and progress, protect well-being of American people, increase public trust, and reinforce our democratic foundations.