The First Patient Poll That Actually Belongs to You, The Patient
I have spent 30 years watching the American healthcare system fail people at the worst possible moment.
Not fail them in a dramatic, make-a-movie-about-it way. Fail them in the slow, grinding, soul-crushing way that happens when you are sitting in a waiting room trying to understand an Explanation of Benefits that was designed by lawyers to be misunderstood. When you are on hold for the third time this week about the same denied claim. When you are supposed to be focused on staying alive and instead you are doing paperwork.
Most people who go through this assume they are the only one. That everyone else has somehow figured out the system and they are the outlier who cannot keep up. That is not an accident. The system is designed to make you feel that way, because isolated people do not organize, and unorganized people do not fight back.
Here is what is actually true. This is happening to millions of Americans every single day. The confusion is not a bug. The exhaustion is not a bug. The sense that you are doing something wrong when you cannot navigate a prior authorization denial while simultaneously undergoing chemotherapy — that is not a bug either. It is the whole point.
I wrote a book about this. I built a nonprofit about this. And now I am doing something that should have existed 20 years ago.
We just launched America's first independent national patient poll.
Not commissioned by a pharmaceutical company. Not shaped by a health system with a financial interest in the results. Not owned by an advocacy organization that depends on corporate sponsorship to keep the lights on.
The We The Patients National Patient Perspectives Poll was created by patients who have lived through it. People who have spent years on the wrong end of denials, bills, approvals, and a system that treats the moment of diagnosis as a paperwork problem rather than a human crisis.
It asks simple questions. What happened to you? What did it cost you? What did you not know you had the right to do? What would have actually helped?
5 minutes. Anonymous. And the data belongs to us, not to them.
Why this matters more than you might think.
Every major source of patient data in this country is compromised by whoever paid for it. Health systems collect data to protect health systems. Insurance companies collect data to protect insurance companies. Even the most well-intentioned advocacy organizations shape their findings around the priorities of their corporate donors.
The result is what I call dirty water data. It tells you what the institutions want you to know about patients. It does not tell you what patients actually experienced, what they actually fear, and what they actually need protected.
Clean water data does not exist yet. Until now.
When We The Patients publishes the findings of this poll, it will be the first time a nationally representative sample of American patients has been asked these questions by an organization with no financial stake in the answers. That data will go to state legislators, to employers, to anyone with the power to turn patient experience into enforceable consumer protections.
Your ZIP code is the most important thing you will enter. It tells us which congressional district you live in. It turns your individual experience into district-level evidence that an elected official cannot ignore. You are not a data point. You are a constituent.
Take the poll. Share it with someone who has a story.
If you have ever navigated this system, for yourself or for someone you love, your experience belongs in this dataset. Not because it will make you feel better, though I hope it does. Because aggregated, it becomes the argument that changes the law.
The link is below. It takes 5 minutes. It is anonymous. And it is the first time anyone has asked these questions on your behalf, without an agenda attached to the answer.
This is what happens when patient experience gets organized.
