The Tenpenny Files with Twila Brase

Twila Brase regularly comes to The Tenpenny Files with new developments in the fight over medical freedom and privacy. This time, she told me something that should concern every person who has ever closed an exam-room door and assumed the conversation happening behind it was private.

A doctor entered a patient’s room with a recording device and verbally offered her a treatment. Then, according to the account Twila shares, he did something extraordinary.

He silently signaled that she should say no.

Think about where we are when a doctor apparently feels safer using a hand gesture than saying out loud what he really thinks his patient should do.

AI-powered ambient listening is moving into medical appointments, where software can listen to the conversation and generate clinical documentation. Twila says nearly 80% of physicians are now corporate employees. Put those two developments together and an uncomfortable question emerges: What happens to honest medical conversations when the doctor knows someone, or something, else is listening?

And then comes the question patients may be increasingly afraid to ask: Can I still trust my doctor to tell me what he or she really thinks?

When a physician reportedly feels safer signaling an opinion with a hand gesture than saying it out loud, we have a much bigger problem than medical privacy.

Are doctors becoming mouthpieces for the institutions that employ them? How much freedom does your physician really have to disagree with a corporate policy, treatment protocol or accepted standard of care? And what happens to the next generation of doctors if they are trained inside a system where following institutional authority becomes easier than challenging it on behalf of an individual patient?

Medicine depends on physicians being able to think critically, exercise independent clinical judgment and put the patient sitting in front of them at the center of the decision.

Twila describes what is happening in even stronger terms: “The mission of medicine has been taken over by the business of healthcare.”

If she’s right, the danger isn’t simply that a machine might be listening.

It’s that eventually the doctor may stop saying what the machine, the employer or the system isn’t supposed to hear.

And AI introduces another problem.

Twila shares reports of AI-generated medical records containing diagnoses or medical events that allegedly never happened. In one example, a patient’s record reportedly stated that she had experienced respiratory arrest and received CPR when the physician said that had never occurred. In another case Twila describes, information from somebody else’s medical visit reportedly appeared in a patient’s chart.

Now imagine an inaccurate AI-generated entry becoming part of the medical history that follows you.

Who catches the mistake? Who corrects it? And what happens when another physician, hospital or insurer makes a decision based on something in your record that was never true?

This is precisely why Twila’s work deserves another look right now.

She is President and Co-Founder of Citizens’ Council for Health Freedom and author of the eight-time award-winning Big Brother in the Exam Room: The Dangerous Truth About Electronic Health Records. She wrote that book in 2018, before today’s AI-powered documentation became part of the medical encounter.

The book explains the infrastructure that made today’s medical data system possible. Our conversation takes that warning into territory the book could not have covered because the technology and systems surrounding it have continued to evolve.

And what Twila brought us this time extends well beyond AI.

She updates us on the federal discussion surrounding informed consent, individual autonomy and religious freedom. She also returns to vaccine registries and explains why the distinction between opting in and opting out is much bigger than bureaucratic terminology.

True consent happens before your information is taken.

With an opt-out system, Twila argues, information can be collected first and the burden then falls on you to discover the system exists, determine whether you’re in it and figure out how to get out. Even after opting out, she explains why patients may need to remain vigilant about information submitted by another doctor or pharmacy.

Then we get to something every parent should understand.

What happened to the blood taken from your baby’s heel after newborn screening?

Most parents know about newborn screening. Far fewer have probably stopped to ask what happens to the blood after the testing is finished.

Twila has.

She has investigated newborn blood-spot retention for years and explains how some states have stored these samples, how long some have been retained and the legal battles parents have fought over storage, research and consent.

And there is one detail that changes how you look at the entire issue.

Some of those babies aren’t babies anymore.

They’re adults.

Yet Twila describes states holding blood spots collected decades earlier. She also explains that identifying information can remain connected to samples or accessible through linking systems, depending on the state and circumstances.

CCHF has created resources to help families investigate their own state’s retention policy and find available procedures for requesting that stored blood spots or related genetic records be returned, destroyed or deleted.

The more you listen to Twila, the harder it becomes to treat these as isolated developments.

The conversation with your doctor. The medical record attached to your name. Your vaccination history. Decisions about whether treatment will be authorized. Your newborn child’s genetic material.

Different systems. The same fundamental question:

Who ultimately controls your medical information once it leaves your hands?

Twila has spent decades following these systems, often long before the public understood what was being built. Big Brother in the Exam Room gives you the deeper history of electronic health records and the infrastructure behind them. This conversation shows you what has happened since, including developments that simply didn’t exist when she wrote the book.

There was a time when closing the exam-room door meant something.

After hearing what Twila has uncovered this time, you may start wondering who else is effectively in the room with you, and whether your doctor feels free to tell you what they really think.

Meet our Guest

Twila Brase is President and Co-Founder of Citizens’ Council for Health Freedom (CCHF), a patient-centered organization established more than 20 years ago to protect patient and doctor freedom.

A registered nurse and longtime advocate for medical privacy and informed consent, Twila has spent decades investigating electronic health records, government health databases, newborn genetic screening, Medicare, informed consent and the growing systems surrounding the doctor-patient relationship.

She is the author of the eight-time award-winning Big Brother in the Exam Room: The Dangerous Truth About Electronic Health Records, published in 2018.

Twila is a regular guest on The Tenpenny Files because the story continues to change. This time, she brings new concerns surrounding AI-powered ambient listening in medical appointments, AI-generated medical records, corporate control of healthcare and the continuing fight over who controls some of our most personal medical and genetic information.

Website

https://www.cchfreedom.org