Federal developments in 2025 have led to concerns about the future of numerous data sources. In response to those concerns, SHADAC is conducting a project called State Alternatives for Health Data Continuity.
Funded by the Robert Wood Johnson Foundation, this project involves cataloguing the data elements in selected federal surveys with health-related data to determine what could potentially be lost. Additionally, SHADAC engaged in conversations with over 40 experts from diverse groups, including researchers, state and federal analysts and data collectors, foundations, advocates, associations, and vendors to assess data elements or data sets at risk of federal disinvestment, as well as options for filling potential data gaps.
In preparation for and during conversations with these experts, SHADAC learned of other efforts taking place across the country related to federal data preservation, tracking, and innovation that include and extend beyond federal health survey data. SHADAC developed this blog to consolidate several examples of efforts related to health data and resources for state data users, researchers, and others to explore in a clear and organized table.
The 22 examples in the table below are not meant to be an exhaustive list of all federal health data preservation efforts taking place. Further, there are parallel efforts in other sectors, such as environment, education, and economy, not listed here. It’s also important to note that information about each effort is current as of December 2025.
At the end of this blog, we also highlight emerging and long-standing collaborations, which may serve as other forums for conversation and action related to federal health data preservation and alternatives. We encourage readers to contact SHADAC if they have comments or suggestions.
Federal Health Data Preservation Efforts
The examples of federal health data preservation efforts detailed below range from archives of key data sets or documentation to potential alternatives for lost data to data user forums.
In the table, we have organized efforts alphabetically by Effort Name, providing details and descriptions of the effort in each of the table columns. The table’s columns are in order as follows:
- Effort Name (Host Organization) — The name of the project, initiative, or activity aimed at preserving, protecting, or improving health-related data collected or supported with federal funding or by federal agencies. In parentheses, we include the name of the Host Organization, which is the name of the umbrella organization where this work resides. The Host Organization could also be the financial sponsor of the project, initiative, or activity, but is not always. If the Effort Name and the Host Organization are one in the same, then we only list the name once in this column.
- Core Function — Each effort/organization is categorized according to the function that best describes their work. Core Function categories include: Advocacy, Agency/Data Monitoring1, Archive/Data Repository, Data Alternatives and Innovation, and User Forum/Support.
- Downloadable Microdata — A “Yes” indicates that the effort or organization make microdata (as opposed to aggregated data) available for download and custom analyses.
- Focus Area or Data Type — This column identifies whether the effort addresses a particular topic (e.g., Medicaid), or the preservation of a particular data set (e.g., Census data).
- Product Links — If applicable, this column includes names and webpage links to relevant products associated with the effort or host organization, including the year it was posted if known.
Table 1. Federal Health Data Preservation Efforts
Effort Name | Core Function | Downloadable Microdata | Focus Area or Data Type | Effort Description
| Sample Product Links |
|---|---|---|---|---|---|
| Advocacy | No | Federal Public Health Data Resources | AcademyHealth is a nonpartisan, nonprofit organization working to help health services and policy research professionals advance the fields of health policy and health services research. For decades, AcademyHealth has advocated for the use of sound evidence in health policy and health care decision making. AcademyHealth houses the Friends of AHRQ (Agency for Healthcare Research and Quality) user forum, a voluntary group of advocates of AHRQ resources (more on Friends of AHRQ later in this blog). In response to the removal of several federal agency webpages by the U.S. Department of Health and Human Services (HHS), AcademyHealth and several other health care organizations took legal action against the HHS Secretary. A settlement was reached in September of 2025, restoring key public health data removed earlier in the year. (See the product link for a list of public health resources restored.) | AcademyHealth Data Lawsuit Settlement: Key Facts and Outcomes (2025) |
Data Alternatives and Innovation | No | PRAMS Data | Pregnancy Risk Assessment Monitoring System (PRAMS) is a joint surveillance survey between the Centers for Disease Control and Prevention and states that aims to monitor maternal and infant health indicators and outcomes. In the summer of 2025, data release was overdue and data collection was interrupted, due in part to RIFs of PRAMS staff. AllPRAMS is a new collaboration started in 2025 that focuses on saving and rebuilding PRAMS. | N/A | |
Agency/ | No | Federal Data Resources | America's Essential Data was founded in response to changes in federal data in 2025. It is a collaborative effort dedicated to documenting the value that data produced by the federal government provides. Its Use Cases Repository tool compiles submissions across a variety of data users; it supports searches of health data-related uses cases. The website also maintains a list of federal data sets, variables, and tools that are no longer available. | Use Cases Repository Tool
| |
Agency/ | No | Federal Statistical Agency Resources | In collaboration with the Urban Institute, the National Academies of Sciences, Engineering, and Medicine, NAPx Consulting, and NORC, the American Statistical Association began an effort in 2024 to monitor capabilities, responsiveness, challenges, and opportunities of the 13 federal statistical agencies. The U.S. Census Bureau and the National Center for Health Statistics are two of the 13 agencies under study. Findings are summarized in “Nation’s Data at Risk” annual reports. The project is funded by the Alfred P. Sloan Foundation, Annie E. Casey Foundation, and the California Community Foundation. Additionally, ASA is calling for volunteers to track changes in federal statistical data releases through the Citizen Science Project. | The Nation’s Data at Risk: 2025 Report
The Nation’s Data at a Crossroads: Year Two Status Report (2025)
The Nation's Data at Risk: Meeting America’s Information Needs for the 21st Century (2024 Report) | |
| User Forum/ | No | Federal Data Resources | Founded in 1975, the Association of Public Data Users (APDU) is a national network that connects users, producers, and disseminators of government statistical data. APDU members share a concern about the collection, dissemination, preservation, and interpretation of public data. In response to these concerns, APDU launched a Rapid Response Series of data briefings and webinars, one of which discussed the food security supplement that had been included in the Current Population Survey (discontinued in 2025). APDU also maintains a list of data archiving efforts entitled “Safeguarding Data” some of which are highlighted in this blog. | Rapid Response Series Webinars (2025)
Safeguarding Data List |
Advocacy | No | Census Data | The Census Quality Reinforcement (CQR) Task Force, housed by the National Conference on Citizenship, is a nonpartisan, multi-disciplinary group of organizations and individuals dedicated to improving the quality of U.S. Census Bureau products, particularly the 2030 Census and the American Community Survey. The Task Force has expressed concerns to the U.S. Census Bureau director relating to overcoming challenges with undercounts in marginalized populations. | N/A | |
Agency/ | No | Public Data Sets | The Data Foundation is a nonprofit that supports evidence-based public policy and open government data through research, collaboration, and advocacy. Its Center for Evidence Capacity is the home of several efforts working to track changes at the federal level that affect the evidence necessary to monitor and evaluate public policy. In February of 2025, it launched SAFE-TRACK (Secure Anonymous Federal Evidence, Data and Analysis Tracking), providing a way for professionals to confidentially submit how changes to federal evidence impacted projects, programs, or operations. In March of 2025, the Center began its Evidence Capacity Pulse Report series to document changes to the federal data and evaluation infrastructure on a monthly basis. And in December of 2025, it announced a new Evidence Act Hub to store resources related to federal agency implementation of the bipartisan Evidence Act of 2018, which requires agencies to prioritize data and monitoring that affects the public. | Evidence Act Hub Resource
Evidence Capacity Pulse Reports (2025)
SAFE-TRACK Portal | |
Data Alternatives and Innovation | No | Public Data Sets | The Center for Open Data Enterprise (CODE) is a nonprofit that promotes the application of fully open data. In 2025, it convened roundtable discussions and released a report with the National Conference on Citizenship (with funding from the Robert Wood Johnson Foundation) about the future of data for health and health care improvement; specifically, the report reviews the current state of government affairs and provides a summary of current efforts in six public health domains as well as a list of cross-cutting recommendations for action. | Ensuring the Future of Essential Health Data for All Americans Report (2025) | |
Archive/ | Yes | Social Science Public Data Sets | ICPSR is a consortium of over 800 academic and research organizations that provides training and education to social science researchers in data science and data analytics methods. ICPSR also maintains social and behavioral science research files, data sets, and data-related publications. DataLumos is one of these ICPSR archives and acts as a crowd-sourced repository of government data resources. Users can sort through this data by subject, access level, government agency, and more. | ||
Archive/ | Yes | Federal Data Resources | Started in February 2025, The Data Rescue Project (DRP) is a coordinated effort of three data organizations (including members from the International Association for Social Science and Information Service and Technology (IASSIST), Research Data Access and Preservation (RDAP), and the Data Curation Network). DRP efforts include data gathering, data curation and cleaning, data cataloging, and providing access to data assets. Its recently released tool, the DRP Portal, is an interface for over 1700 data sets across a variety of government offices and agencies, including over 300 data sets categorized as health or health care related. | The Data Rescue Project Portal | |
Agency/ | No | Federal Data Resources | Dataindex.us, an effort founded in 2025, is dedicated to monitoring the status of federal data sets. Its team maintains “Data Checkup” webpages with information about certain federal data resources, including whether there are issues with future data availability. Dataindex.us is tracking potential changes in federal data by monitoring announcements in the Federal Register and works to facilitate public comments through its “Take Action” tool that compiles and allows users to sort through Register announcements both open and closed for comments. In addition, the team is tracking Information Collection Requests (ICRs) submitted to the Office of Information and Regulatory Affairs; ICRs must be submitted by federal agencies when they create, renew, or modify information collection. | Data Checkup Resource
Take Action: Public Comment Inventory Tool
Information Collection Request (ICR) Inventory Tool | |
User Forum/ | No | Federal Data Resources | The Federal Data Forum (FDF) is a federal data user community affiliated with the Population Reference Bureau, a nonpartisan, nonprofit research organization focused on improving well-being in the U.S. and globally through evidence-based policy and practices. The FDF maintains a discussion forum, provides monthly updates on federal data-related news, writes blogs, and hosts events regarding federal data sets and policies. | ||
Agency/ | No | Public Workforce | The Volcker Alliance is a nonprofit formed in 2013 to support the public workforce. It began a new initiative in January of 2025 with the Organization of American Historians to document the experiences of workers affected by federal government reductions in force (RIFs) and cancelled contracts. This project also aims to preserve the institutional knowledge these impacted individuals have. It is planned for these documented stories and histories to be made publicly available. | N/A | |
Archive/ | Yes | Centers for Disease Control and Prevention (CDC) Data Sets | Founded in 1996, the Internet Archive exists as a digital library and archive of Internet websites and webpages, books, images, video, and much more, including data sets. Users of the Internet Archive have archived many CDC data sets uploaded to https://data.cdc.gov/browse before 2025. Note that this excludes data sets that are corrupted and that are not publicly accessible. | Internet Archive: CDC Datasets Uploaded Before January 28th, 2025 | |
| Archive/ | Yes | Census and Survey Data | IPUMS Center for Data Integration is a research data center based in the University of Minnesota’s Institute for Social Research and Data Innovation. Since 1995, IPUMS has been preparing, integrating, harmonizing, and making accessible government data for users free of charge. The IPUMS Health Survey project, in particular, harmonizes the National Health Interview Survey and the Medical Expenditure Panel Survey for research purposes. | |
| User Forum/ | No | Administrative Data | The Massive Data Institute (MDI) is a research data center at Georgetown University focused on using advanced computing methods to support interdisciplinary, data-driven research, enable data privacy and security, provide training, and inform public policy. Recently, MDI partnered with Mathematica to host a webinar series about the impact of federal funding cuts on the administrative data, including Medicaid data, and research infrastructure. | The Cost of Cuts Webinar (2025) |
| Data Alternatives and Innovation | No, but website indicates that materials can be found on GitHub. | Public Health and Healthcare Data and Visualizations | PopHIVE, which stands for population health information and visualization exchange, is an innovative public health data platform bringing together near real-time data from diverse sources for better decision-making. The PopHIVE website includes data dashboards on childhood immunizations, chronic diseases, and respiratory diseases, with more to come, which integrate different but related data sources, offer filtering, and provide documentation on how to use the data. | N/A |
Advocacy | No | Data Disaggregation | The Data Disaggregation Action Network (D-DAN) works to improve data collection, quality, and accessibility in order to better understand disparities and achieve racial equity. It recently launched the “Reclaiming Our Data Campaign” to raise awareness and action related to the value of data on race and ethnicity. D-DAN partnered with The Leadership Conference Education Fund to conduct case studies of state adoption and implementation of data disaggregation policies, which can be more detailed than the federal requirements for race and ethnicity data collection outlined in the Office of Management and Budget’s revised Statistical Policy Directive 15. Findings and considerations were published in a recent report. | Disaggregation Nation: State Pathways and Key Considerations for Improved Race and Ethnicity Data (July 2025) | |
| Archive/ | Yes | Public Data Sets | The Library Innovation Lab (LIL) at Harvard Law School consists of a team of librarians, technologists, lawyers, and other experts working together to facilitate access to and use of legal and other information. In 2025, LIL launched the Public Data Project to download, sign as authentic, and make copies of public government data available for researchers, academics, the general public, and beyond. In addition, LIL developed an interface for exploring these government datasets (Data.gov Archive Search). | |
Agency/ | No | Federal Data Resources | Tracking Government Information is a project that relies on the public and librarians at three universities (University of Minnesota, University of Illinois, and California State University) to track removed, modified, and impacted federal government information and resources. | ||
| Archive/ | Yes | Public Data Sets | The University of California Santa Barbara has created a webpage archiving data sets and federal websites from federal health agencies such as the CDC and the National Institute of Health as well as other non-health related federal agencies such as the Social Security Administration and the Department of Education. This archive includes a wide variety of saved information, including data sets, data dictionaries, tables, and more. | N/A |
| Archive/ | Yes | Health and Human Services Data Sets | The Urban Institute, a nonprofit think tank, conducts research and produces evidence on a variety of topics including family and financial well-being, health policy, housing, work, education and labor, and more. Urban has preserved 11 data sets, two in the health space, in its Data Catalog tool. |
Other Efforts: Noteworthy Collaborations and Coalitions
In the last year, at least two regional collaboratives2 have formed due to concerns that public health leaders at the federal level were making decisions not backed by evidence and data.
Both The West Coast Health Alliance and The Northeast Public Health Collaborative were formed in order to share expertise, promote evidence-based public health policy and decision making, and improve coordination. Some of these groups’ initial projects focus on immunization standards and emergency preparedness, respectively. These collaboratives may serve as a regional model for setting priorities and developing guidance related to health data collection, measure alignment, and analyses.
Additionally, long-standing coalitions of data users formed to support the work of particular federal statistical agencies are other efforts being drawn upon recently for understanding the value of agency data and tools, discussing changes, and sharing ideas for improvement. Known as “Friends of [governmental agency],” these groups, such as the Friends of the Bureau of Labor Statistics or the Friends of the Agency for Healthcare Research and Quality (hosted by AcademyHealth) range in sophistication and structure, but could be useful to state data users or researchers looking for assistance using federal data.
Stay Up-to-Date with the Latest from Our Health Data Continuity Project
As the landscape of federal health data and policy evolves, SHADAC plans to continue to monitor and provide information related to federal and state data collection as well as alternatives states and others could take to fill potential data gaps. Stay up-to-date with our latest releases by signing up for our monthly newsletter.
Curious about what data gaps could emerge if certain federal surveys or data are changed or eliminated? Our Survey Data Finder tool is designed to help users identify health domains that may be at risk.
[1] This category includes tracking federal agency restructuring, turnover, as well as data availability, quantity, and quality.
[2] As of December 2025, a third collaborative representing states in the southern part of the U.S. is in the planning stages.