I have seen this movie before, and not only in health care. A corporate team spent months crafting a return-to-office plan without talking to the managers who would enforce it or the employees who would rebuild their lives around it. On Day 1, it collapsed. No one was sure who counted as “essential,” what equipment was allowed at home, or how hybrid meetings should run.
In another instance, a public health department rolled out a new vaccination schedule without consulting the clinic receptionists who answered the phones or the parents who would navigate the rules. Phone lines jammed, waits exploded and families gave up.
The pattern is consistent: People at the top make decisions without meaningfully involving the people who will carry them out or the people who will live with the consequences, and everyone pays the price.
Why do we keep getting it wrong? Because including implementers slows things down, and including those most affected slows them even more. The people with a stake in the process and/or outcome may report that the timeline is unrealistic, the tech will not hold, or the brilliant idea has a flaw that someone missed. It is easier to sit with people who already agree with you. It is more comfortable to imagine the world works the way you hope it does. But that comfort is expensive. Every shortcut taken at the design stage turns into chaos, delays, and damage control later.
So how do we get better? We need people in positions of power, legislators, agency heads, hospital executives and corporate leaders, to insist on meaningful consultation with the communities their decisions will touch, and to do it before the press conference. Bring in the people who will use it, enforce it and live with it. Test policies in messy, real-world conditions. Value lived experience alongside credentials. These are not nice-to-haves. They are the difference between policies that harm and policies that work — and in some situations, perhaps even between life and death.
Other recent approaches to health policy by the Trump administration have also triggered alarm bells. Last month a new federal “review” of the abortion medication mifepristone was announced at a moment when patients and clinicians needed clarity, not more uncertainty. Governors and medical advocates warned it would chill access to a drug used in a majority of U.S. abortions. It was crafted without a voices from a delivery ward or an overcrowded clinic, and pregnant people and their doctors were left without a clear path forward.
That same closed-loop thinking is what lets HHS Secretary Robert F. Kennedy Jr. posture as a champion of the people while elevating loyalists over frontline experts, a pattern public-health leaders warn is corroding trust and care delivery. These moves turn health policy into policy theater, and the result is very real danger for patients and their loved ones. That is worth naming, remembering and refusing to normalize.
Menopause accommodations may not be on your radar. The calculus of taking antidepressants during pregnancy might not be either. But if you have ever been on the receiving end of a decision made without your input, you know the feeling of the scrambling and the frustration and the quiet question of why no one thought to ask the people who would have to live with it. Every policy is a bet. You can bet on how it looks on paper, or you can bet on how it will work in real life. After years of watching policies succeed and fail, and living through both good and bad ones, I can tell you the smart bet is always on the people closest to the consequences. Policy is not abstract when it is your body, your family, or your daily reality on the line.
Stacey B. Lee, JD, is a professor at Johns Hopkins Carey Business School and the Bloomberg School of Public Health and the author of the forthcoming book “Transforming Healthcare Through Negotiation (Routledge).”
This article originally appeared on HuffPost in August 2025.
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