Data for Democracy in Norwalk

Part of our Data for Democracy series

CTData Collaborative is the Connecticut State Data Center, the liaison between the Census Bureau and the public. When data were taken down earlier in 2025 from many federal websites, CTData quickly downloaded datasets important to the state and to our work.

In response to this situation and the many challenges to public data that have occurred since January of this year, we at CTData have been partnering with local organizations to bring people together across the state to share information about what we know about changes to federal and state data, and also to help folks connect locally around data and strategies they can use to best serve their region.

On October 30, 2025, we partnered with Norwalk ACTS to bring this event to Norwalk. This post includes highlights from this session, but can’t do justice to the excellent presentations and conversations. We will be continuing this conversation at our annual conference on December 3. We hope you’ll consider joining us! And you can sign up for our newsletter to receive information about the next event when it is scheduled.

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There have been growing concerns about the effect that many decisions over multiple administrations will have on the crucial decennial count in 2030.

  • Funding for Census Bureau follow-up to households that have not responded has been decreasing over the last decade, according to The Leadership Conference on Civil and Human Rights. This trend will contribute to a decrease in the reliability of the 2030 decennial census.

  • The current administration sows greater mistrust of the census by suggesting that the government should run a mid-decade census.

  • The current administration has sought to obtain information from the IRS about immigrants, which may result in lower response to any federal surveys by households concerned about their information being used illegally, no matter their citizenship or immigration status.

The Consumer Price Index (CPI) sets cost-of-living increases for Social Security Payments, and businesses rely on it to ensure employee salaries don’t effectively get cut each year due to inflation. Between inadequate funding under the previous administration and the current administration, experts are less confident in the CPI numbers. If CPI is not calculated correctly, workers across the state will have less spending power simply due to a statistical error.

We can engage in a few ways.

First, many organizations are taking action at the national level. One is the Association of Public Data Users (APDU), which offers rapid response webinars. Sign up for their newsletter to receive notifications of their webinars.

Second, you can attend or watch the rapid response webinars being offered by APDU. Recently, they held a briefing on Understanding the Food Security Supplement, presented by the Association of Public Data Users (APDU), Population Reference Bureau, Food Research and Action Center, and dataindex.us. You can see more action ideas at the end of this post.

 

What’s Happening to Public Health Data — and Why It Matters: Local Context

Understanding the Stakes

“Public health runs on data” according to Brian Weeks, Program Director of Epidemiology & Informatics at the City of Norwalk Health Department. Professionals across the country rely on accurate, timely information to detect and respond to emerging threats, prevent and control infectious disease, monitor environmental safety—from air and drinking water to restaurant inspections and beach conditions, and much more.

Data also drives how public health practitioners plan programs, evaluate community health needs, and secure funding. These insights guide not only health departments but also healthcare providers, social services, policymakers, stakeholders, and residents in making informed decisions to protect and improve community health. As the saying goes, “An ounce of prevention is worth a pound of cure.”

Why Changes to Public Health Data Matter

When data collection or access is disrupted, public healthv professionals lose their ability to develop effective programs or justify funding to sustain them. Everyone benefits when data helps prevent disease and injury. When that data is restricted or eliminated, everyone is at greater risk.

Unfortunately, there have been changes in recent months that are already limiting how the CDC and health departments can collect, analyze, and share data. These shifts are reshaping the national landscape for public health data collection, surveillance, and guidance.

Examples of Data Loss and Disruption

1. Reduced Disease Surveillance. The CDC’s FoodNet program, which once tracked eight major pathogens responsible for foodborne illness, now requires monitoring of only two. As an example, Listeria, a bacterium particularly dangerous to pregnant women and newborns, became optional. Without these data, epidemiologists lose visibility into outbreaks and risks for vulnerable populations such as children, older adults, and immunocompromised individuals.

2. Staffing and Funding Cuts. Federal funding reductions have left fewer trained staff to collect, monitor, and analyze data. Health departments have been impacted and are doing more with less, which undermines data quality and response speed.

3. Advisory Committees Shuttered or Weakened. Critical advisory bodies that once developed evidence-based guidance are being dissolved or restructured.

These changes risk politicizing decisions that should remain grounded in scientific evidence.

4. Disappearing Datasets and Resources. According to Stat News, as of September 15, 2025, 146 datasets have been removed from the CDC website. Even during respiratory virus season, the CDC Respiratory Illness Data Channel has not been updated since the federal government shutdown started on October 1, 2025—suggesting that informing the public on such illnesses is no longer considered a “mission-critical” activity.

5. Partisan Messaging in Place of Information. Some federal public health websites have shifted from providing scientific data to posting partisan messages. For example, the CDC’s Behavioral Risk Factor Surveillance System (BRFSS)—a cornerstone source for national, state, and local chronic disease and health behavior data—displayed political content as of late October 2025 instead of health information (see below).

6. Uncertain Future for Key Tools. The CDC’s Social Vulnerability Index (SVI), which helps public health officials plan for and respond to disasters, was temporarily taken offline in early 2025. Though restored, its long-term future remains uncertain. The next update is scheduled for 2026, but it is unclear whether it will occur.

The Bigger Picture

These developments collectively represent an erosion of the data infrastructure that underpins public health practice. Without robust, transparent, and consistent data, professionals cannot accurately identify health disparities, prepare for emerging threats, or demonstrate the impact of prevention programs. The consequences are not abstract—they affect every community’s ability to stay safe and healthy.

Solution to Start: Build and Maintain a Resilient Data Ecosystem

To protect the integrity and utility of public health data, professionals and communities can take proactive steps to strengthen local resilience:

  • Bridge data partnerships between local, state, academic, and nonprofit sectors.

  • Engage in professional associations to raise awareness and advocate for data transparency and sharing.

  • Leverage state and local data portals, such as Norwalk’s forthcoming Community Health & Wellbeing Profile 2.0 (CHWP).

  • Invest in local data infrastructure—including workforce training, staffing, technology modernization, and analytic capacity.

  • Champion open, transparent, and ethical data practices.

  • Adopt strong data governance policies that prioritize accuracy, ethics, and accountability.

  • Protect data privacy and security, ensuring confidentiality for sensitive information at every stage—collection, transmission, and storage.

  • Maintain secure data backups to safeguard against loss or tampering.

Moving Forward

Public health depends on the trust and cooperation of communities. That trust, in turn, depends on access to credible, transparent data. As national systems face uncertainty, local health departments and community partners must lead the way—ensuring that data remains a tool for prevention, preparedness, and protection for all.

Aligning our language to federal changes with Bonnie Smith

There have been changes implemented via Executive Order that nonprofits are seeking to integrate into their program planning, proposals, and reporting. Bonnie Smith, CEO of B. Weyland Smith Consulting, who provides evaluation and data services (grant program evaluation reporting for CDC and SAMHSA, behavioral health and public health needs assessments, low-barrier and client-friendly database development, and data analysis), shared insight from her work on federal grant reporting for nonprofits.

A few key points regarding federal grant seeking and reporting that Smith shared included:

  • In data collection, don’t include sub-populations, reference diversity, equity, and inclusion.

  • In grant implementation, follow executive orders, even if they are mid-grant cycle.

  • In federal grant-seeking and reporting, grant narratives need to shift away from focusing on subpopulations with the greatest need.

Local data-driven programs must adjust when federally funded:

  • There are now barriers to serving many groups who are identified with most need, based on data, and enhancing programs to meet these folks where they are.

  • Data collection and analysis of groups known to have increased risk of health disparities and other related risk factors have been discontinued.

Examples of how to adapt or “pivot”:

  • Shift programmatic language or focus from race/ethnicity, gender, and sexual identity. Focus instead on geographic differences, economic differences, and other known risk factors.

  • Data can be analyzed in many ways to understand who is at most risk.

B. Weyland Smith Consulting also conducts the Youth Voices Count Survey of youth in public schools in grades 6-12 on behavioral health. They conducted a Norwalk survey in 2022 and 2024, and are gearing up for their 2026 survey. Across the state, they have over 70,000 youth represented in the dataset, and almost 40% of schools have participated in their surveys. They are also working to create a school climate survey for students in grades 4-12, as well as parents and caregivers, and teachers and staff.

 

What You Can Do: Action Steps for Data Stewards, Providers, and Advocates

Stay Informed and Engaged

Be Creative with Data

  • Partner with other organizations in your field or in your community to identify data gaps and explore ways to create alternative sources together.

  • Collaborate with your community in participatory data collection. Find areas of overlap in your questions and their questions and collect data together.

  • Consider identifying the qualitative data you already collect through the services you provide and whether you can use that to identify trends in your community over time. Consider combining with above!

Strengthen Your Organization’s Data Collection Practices

  • Watch the webinar we hosted with the Massive Data Institute, Serving Clients Safely: Data Protection Strategies for Uncertain Times.

  • Prioritize informed consent: Clearly communicate to clients and communities how their data will be used, stored, and protected.

  • Monitor and address declining response rates—engage directly with communities to understand and address their concerns about providing their personal information.

  • Continue collecting standardized demographic data (race, ethnicity, language, disability) as required by Connecticut law.

  • When you collect data, ensure data remains confidential, private, and not weaponized.

Protect Privacy and Build Trust

  • Create a policy and communicate with staff at all levels of your organization of what to do if a request for data is made. Most staff are not aware of legal requirements of privacy protection and people may target staff members how are least likely to be aware of the law.

  • Stay up to date on Connecticut’s Shield Law and new privacy protections.

  • Do not release identified data without understanding the legal requirements and protections in place. Deidentify data whenever possible.

  • Create an informed consent process if you do not have one, and update your informed consent process if you do. Be sure to include information that has changed based on state and federal law..

  • In your own work, share with your partners what you do to protect the data you collect.

  • When collaborating with the community to make specific data to be available, share with them about why we have public data and talk about the guardrails we want to keep our community safe.

  • Create clear, ethical use cases with the community before advocating for public data. We need to make it clear what we want to use the data for before we advocate for them and what we want protected. Some datasets we want data to talk to each other, some we don’t.

Advocate and Report

  • When you see something change or a troubling trend in data, submit a letter to the editor or an op-ed to a Connecticut paper.

  • Report any federal impacts on your programs to CT OPM through their weekly survey and federal impact portal.

  • Advocate for continued state investment in data infrastructure and workforce to maintain high-quality, reliable datasets. When relevant, respond to federal registers regarding data collection and security. Information on these can be found at some of the resources provided on this page.

  • Take Action with information from DataIndex.US, which is monitoring federal datasets and Federal Register Notices to identify when datasets are at risk. Bookmark their Take Action page and sign up for their newsletter.

  • Bookmark APDU’s Take Action Hub and take action!

  • Submit your stories of which federal data is essential for your work at Essential Data. US. You can also find stories here on datasets of interest and share these in your own communications and data advocacy.

  • Submit how you use race and ethnicity data at wearethedata.us, a project of the Leadership Conference on Civil Rights.

Share this information

  • If this information has been valuable to you, please consider sharing with a colleague who may find this relevant.

 Other resources shared at this event

 

Looking Ahead: Join Us at a Future Event

If you’re disappointed that you missed this event, you still can join us at a future event! Register for our conference in Hartford on December 3, which will include more information on this topic. Bookmark this page to get alerted when new events are posted. We will be holding events in 2026 in other locations across the state, so sign up for our newsletter to receive information about future events!

For More Information

Head on over to our Data for Democracy page for resources and other events coming your way. Save the date for our annual conference, which will explore these topics further. You can stay up-to-date on the latest data and tools by subscribing to our newsletter and following CTData on LinkedIn, Instagram, and Bluesky. 

Sarah Eisele-DyrliData for Democracy Series