Date: Saturday, August 30, 2025
We are Liz Harvey (Behavioral Health Outcomes Data Services) and Patrick Kinner (Center for Behavioral Health Integration), evaluators with years of experience leading behavioral and physical health evaluations, including SAMHSA-funded Certified Community Behavioral Health Clinics (CCBHCs).
In today’s political climate, many of the communities we work with are living in fear: fear of deportation, surveillance, and systemic harm. One of our CCBHC partners recently shared that clients have stopped coming in for services, not because of anything the staff have done, but because they worry about being seen in public spaces or having their information collected.
This fear now extends to data collection efforts. Clients have voiced discomfort completing federally required outcome surveys, such as the National Outcome Measures (NOMs), a standardized tool used in many federally funded SAMHSA programs to track demographics and outcomes. Even after clinical staff explained that data would be anonymized, aggregated, and never reported individually, many clients still felt unsafe.
The behavioral health system offers critical support, yet it exists within a federal structure that has historically harmed immigrant and marginalized communities. Skepticism toward institutions, including evaluators and service providers, isn’t paranoia; it’s a survival strategy.
As evaluators, we are bound by the AEA Guiding Principles, which call for rigorous, respectful, and equity-centered practice:
When clients fear that sharing their stories, or even just showing up, could lead to harm, our ethical obligation is to pause and reconsider. Grounded in IRB principles, we must not collect data when the risks to participants outweigh the potential benefits.
Many mandated tools like GPRA/NOMs offer little clear benefit to the individuals or programs providing the data. While we recognize the value of aggregated data for state and federal reporting, its use has often been one-directional, rarely improving the quality of life for the people behind the data.
Beyond ethics, the practical implications are real. As participation drops, service providers must adapt outreach, engagement, and delivery models. Data collection is not a neutral act. It influences trust, access to services, and overall community well-being.
When we see rising fear, refusals, or disengagement—those are data in and of themselves. They tell a story of harm, systemic mistrust, and policies that fail the very communities these programs are meant to serve. High rates of “Refused to Answer” responses aren’t just a data quality issue; they’re a call to action.
So what is our role as evaluators? To advocate for trauma-informed, culturally responsive evaluation practices that prioritize community safety over compliance. We must speak up when mandates risk harm. And we must help partners and funders understand the real-world impacts of data demands.
In cases where data collection is required, we use this tool to help explain how data are kept safe and anonymous.
Let us also remember: most data collection tools, including NOMs, offer a “Refused to Answer” option. This serves as a powerful reminder that we, too, have a choice. We can refuse harmful practices. We can stand with communities. We can choose integrity over compliance.
As evaluators, our duty is not just to collect data, but to protect the people behind it. We always have a choice. So do the communities we serve. Evaluators can make these choices in our individual practice and in collective action, like in this statement from the Greater Boston Evaluation Network.
The American Evaluation Association is hosting Behavioral Health TIG Week with our colleagues in Behavioral Health Topical Interest Group. The contributions all this week to AEA365 come from our Behavioral Health TIG members. Do you have questions, concerns, kudos, or content to extend this AEA365 contribution? Please add them in the comments section for this post on the AEA365 webpage so that we may enrich our community of practice. Would you like to submit an AEA365 Tip? Please send a note of interest to AEA365@eval.org. AEA365 is sponsored by the American Evaluation Association and provides a Tip-a-Day by and for evaluators. The views and opinions expressed on the AEA365 blog are solely those of the original authors and other contributors. These views and opinions do not necessarily represent those of the American Evaluation Association, and/or any/all contributors to this site.