Twila Brase Reveals the Secret Language Behind Health Privacy Laws
There is a secret code hidden in the language of health privacy laws. Words we understand in plain speak, like “quality,” “meaningful,” and “value,” mean something totally different when found as law in the US Code.
You will not want to miss this eye-opening interview with health data privacy expert Twila Brase, RN, PHN. A former public health nurse, Twila sheds light on HIPAA’s dirty little secret, and why doctors turn away pediatric patients who are not on the CDC vaccine schedule. She answers the question begged by HR 550, the Immunization Infrastructure Modernization Act: Is it really possible to expand federal access to data but at the same time protect our privacy?
Click below to watch!
You will learn more in these 30 minutes about data privacy and the deterioration of the doctor-patient relationship than you ever thought you could. This very difficult and technical subject is boiled down to bare bones. Twila exposes the real meaning behind the language of HR 550 through the lens of decades of experience with prior so-called privacy laws in health data.
- about financial incentives and the use of electronic databases to control health decisions at the point of care;
- why expanded access to health data would be (and has been) dangerous for Americans;
- how corona-policies changed the landscape of health privacy; and
- what easy steps and tools you can use today to protect your privacy, and the sanctity of the doctor-patient relationship.
Best of all, you will feel uplifted to action after watching.
Twila reminds us, “If there is a bill to expand collection of data, they don’t have it yet.”
Steps You Can Take
Step One: Stop the federal government from luring states and doctors to give away your private health data. Send a quick email to tell your lawmaker to vote NO on HR 550. (BONUS: If they email you back, keep the dialogue going. Use talking points you learned today!)
Step Two: Arm yourself with knowledge. Visit Citizen’s Council for Health Freedom to get important news and updates on health freedom. Get on the list to know when you can get your updated 3rd edition of Big Brother in the Exam Room, and the COVID-19 Quick Reference Guide for step-by-step evidence-based help for covid infections. Find a health provider removed from the shackles of data-based medicine–look to the growing Wedge network!
The entire interview has been transcribed and is available below, with permission to quote and source material from, so long as an original attribution link to this article is used as a citation for the original interview.
Full Interview Transcript
Leah Wilson: Hi, my name is Leah Wilson, Executive Director and Co-founder of Stand for Health Freedom. And today, we have a special guest with us to talk about what our team sees as the forefront of the health freedom issues right now, and that is privacy. We just released a call to action on Congressional Bill HR 550, which talks about bolstering the immunization infrastructure in the access to data at the federal level, and we got quite the response from Congress to our advocates, talking about how the expansion of the access to data is actually good for their privacy. And we know that that’s not true.
Twila Brase is here with us today as an expert to debunk some of those myths and help us understand the privacy issues. So thank you so much, Twila, for joining us.
Twila Brase: Glad to be here. Thanks, Leah.
Leah Wilson: Twila Brase is a public health nurse, and she is also the President and Co-founder of Citizen’s Council for Health Freedom, which is a non-profit that is patient-centered, privacy-focused and pro-free market policy.
We saw Twila established 23 years ago in Minnesota to support individual choice in healthcare and to support the privacy as it relates to medical decision-making and your genetics.
She is also the author of an eight-time award-winning book called Big Brother in the Exam Room: The Dangerous Truth about Electronic Health Records. And so I look forward to hearing more about the book also during our conversation.
So let’s dive in to what the catalyst for our conversation here today, and that is the bill that’s currently in front of Congress—HR 550. We saw that bill passed the House. So you see all the headlines that say that it’s passed. And some people who read that think, “It’s law now.”
But really, what happened is it passed one chamber of the two that it has to go through before it’s signed by the President.
So we saw bipartisan support in the House, wide-sweeping support for this. And so it perked our attention here at Stand for Health Freedom to say, “Wow. Our conservative lawmakers need educated on what this bill would actually do,” because there was a lot of confusion about this bill which would, as we have here on our site, that paves the way for state and local health departments, as well as public and private healthcare providers, to share personal health date with the federal government.
That’s what it does, and it has millions of dollars behind it to create these infrastructures and guarantee their success.
So it’s obvious to us that this bill could be used as a backdrop to strengthen the enforceability of federal vaccine mandates, if they stand, and to normalize vaccine discrimination. But yet, the understanding in Congress is that this is a pro-privacy bill.
So we wanted to meet up with Twila and have her speak to us about what she sees as the implications of HR 550, and if it really is possible to expand federal access, but at the same time protect our individual privacy.
Twila Brase: So it is not possible to expand the government access and protect privacy. And I just want to maybe disabuse your audience of the idea that HIPAA protects privacy because that is one of the biggest deceptions that has ever been foisted on the American people.
And so they need to understand that HIPAA is actually within the industry, within the government. HIPAA is considered a permissive data-sharing rule. And one of those permissive sharing pieces is for public health oversight, and also, if there’s any state law that allows it.
So across the country, most states have an immunization registry, and the states often, when they get money from the federal government, part of that is tied to a requirement that data is shared, so HIPAA allows that kind of data to be shared. There is nothing about HIPAA that protects your privacy, absolutely nothing, except for one thing—if your state has a stronger state privacy law, that law must be followed.
So if your state says that no immunization information can go out the state borders, outside of the state borders, without consent, then that has to be followed. And the only time that that would be shared is with the patient’s informed consent.
But most states think, most legislators, most members of Congress as a matter of fact, and all their staffers—I know this from meeting with them, think that HIPAA protects privacy and that it makes sure that the data is just between them and their doctors. They have said so. And they do not understand that when you sign that HIPAA form, the only thing you’re signing is that you acknowledge or have received or understand that you have read the notice of privacy practices, and therefore, you understand that you have no privacy in the exam room.
That’s what that means. That’s why we have an entire campaign to get people to refuse to sign the HIPAA form, to refuse to propagate the myth that HIPAA protects privacy.
By law, you don’t have to sign the form. They have to make a good faith effort to get you to sign the form—that’s what the rule says, but you do not have to sign the form.
Some people have been denied healthcare as a result, but most people can argue their way through, but why should you have to argue in the exam room? You’re a vulnerable person in the exam room. You shouldn’t have to come armed.
So anyway, you just need to know that HIPAA does not protect privacy, and every time the federal government gets access to more data, they just get more ways to share it, more ways to use it, more ways to analyze it, and in this case, of course, more ways to turn the screws, as it were, on anybody who chooses not to follow whatever the government says are the vaccine requirements or recommendations.
We always say, he who holds the data makes the rules. If you hold the data, your doctor holds the data, and nobody else gets access to the data, they can’t do anything to you, they can’t do anything to your doctor.
So we’re in a very difficult situation at the moment with COVID, and what has happened with HIPAA, and what has happened, but that doesn’t mean that it has to stay that way. We have to bring privacy back.
Leah Wilson: I love what you said, correct me if I say it wrongly, but he who holds the data makes the rules.
Twila Brase: Absolutely.
Leah Wilson: And that’s exactly right. And right now, we are seeing the federal mandates for vaccination or test become very vulnerable. We don’t know what the Supreme Court is going to decide. Hopefully, we will know soon.
And as those mandates are vulnerable, then relying on the collection and oversight of data is a backdoor way for the same authority for the further rule-making.
So the biggest talking point, Twila, that we’re getting a response from Congress, right, when our advocates are e-mailing and saying, “Please vote no on HR 550,” the response is, “Well, this is not creating a centralized federal database for vaccine information.”
So can you speak to that? Does the infrastructure need to be “centralized” in order for us to be vulnerable to federal overreach and abuse?
Twila Brase: So let’s just talk about that database and the immunization laws from the very beginning. So the Robert Wood Johnson Foundation and The All Kids Count Program, which was intended to fund immunization registries in every state, and they were very successful at that. I believe that the immunization registry is the camel’s nose into the privacy tent. It is the way to eliminate it, but it’s also the way to build a data system that collects not only vaccination information, but all sorts of information. It was the way to get to an electronic health record system at the government level, so that they could build on that.
And so what I think your listeners need to know, if they don’t know it already, is there’s something called a distributed database, which means that the data stays where it is, but there is a network.
So it’s like a network of networks. And it’s called the eHealth Exchange. And it’s funded at the federal level.
Some have said that 40% of American’s healthcare information, not just vaccination information, healthcare information, is already in the eHealth Exchange. It used to be called The National Health Information Network. They changed it to this nice, little name that doesn’t sound quite so big government. But it is as big government, and in my book, there is their own picture of the architecture of the eHealth Exchange.
And so what happens is there are centralized rules, federal national rules, and everybody has their node on the network. And then everybody who is qualified to access the data, including all those people in HIPAA, which I should say to you is 2.2-million entities, which I can talk about in a moment. But anyway, everybody gets their node on the network, and then according to the rules of access, they can access the data all across the nation. And if the federal government chooses to share data, for example, from what they’re gathering off of the vaccination registries, they could share it with the World Health Organization—they could share it with whomever they want.
The move is towards international sharing of data. And so, this is not just about vaccinations. This is about full lifestyle profiling. The vaccines, the vaccine passports, are all about gaining control over your life, gaining control of what kind of life you can have, how much you can publicly engage, according to what is in your record.
And just to take this just a step further, there’s something called The Social Determinants of Health. This has been rising up over the last few years, much more. It started a long time ago, but it’s really been rising up the last few years. And that’s like everything about your life they want in your electronic health record.
So in the eHealth Exchange. And the list is very broad, but it includes things like your education, your income, your preferences, your behaviors, your hobbies—anything that you can think of in your life that could be a social determinant of how much of a healthy person that you will be, they want it in your record.
So what we’re talking about and what I talked about in my book was that this becomes a comprehensive dossier. I think these two things work together—the electronic health record, which, by the way, just as a little piece of this, those electronic health records that are ubiquitous, in the exam room and in the hospital, they are there because they were mandated by law in 2009 to be in place by 2014, or any doctor or hospital who did not have the electronic health record that is certified by the government—so it can’t be just any electronic health record. It’s got to be certified by the government to do what the government wants, and it has to be used “meaningfully.”
Those are the words, “meaningfully used.” And if you do not use it meaningfully, if you do not have it, if you do not use it meaningfully, you are docked in your payment from every Medicare patient that you see.
So it’s a quasi-mandate. It’s not a full mandate. And so that’s why it’s there—it’s become a data collection tool. It’s become a “control the doctors” tool. You see it now in COVID unlike it’s ever been seen before where doctors are just following the protocols on the computer. It’s very hard to get outside those protocols, to do something that’s not on one of the menu choices.
So this is all about profiling the doctors, controlling the doctors, profiling the patients, putting pressure on the patients to do what the government wants, including vaccination.
Another thing to understand is quality measurements. So that’s such a nice, [unintelligible 00:12:21] term or value-based healthcare. These all come out of the Affordable Care Act and some of the Medicare legislation. And what it really means is a doctor or hospital only provides “quality” if they comply with the way government wants medicine practiced. And so it’s really about compliance.
So the quality scores are really about compliance scores. Value-based purchasing or value-based healthcare means you might not get paid for something that the patient really needed because somebody on the outside determines there’s no value in it, according to an equation.
I’ve heard of an anesthesiologist who did an entire surgery and didn’t get paid because the health plan came back and said, “Oh well, we don’t think that was necessary, so sorry. Nothing for you.”
Or Medicare. Medicare does the very same thing.
And so it’s really a two-pronged thing here. One is the electronic health record, which is then used, or should I say, the immunization registries are connected. They connect together with the electronic health record, and they also connect together with the Prescription Drug Monitoring Systems. And these things are being integrated together at the clinic level, and the data exchange is going both ways.
And you saw that in HR 550 that it talks about bi-directional exchange of information to the government from the exam room, and from the exam room to the government, and back and forth.
So this is not about protecting privacy. There’s nothing about protecting privacy. This is just building government control over what happens in the exam room and what they think you must do in your life to fully participate in public life in America.
Leah Wilson: And one of the misunderstandings is that when that exchange happens back and forth, from the clinic to the government, that that information will be de-identified. Because there was a little part in the bill that talks about de-identification of data, they think it applies to the breadth of the exchange of data. Do you understand this bill to promise a de-identification before the government sees anything?
Twila Brase: So we got the term. But what does the term mean? In HIPAA, that term is very specific about what de-identification means. But HHS, the U.S. Department of Health and Human Services, in talking about this, as well as other organizations like the National Committee on Vital and Health Statistics, they’re very clear that de-identification does not mean that you can’t necessarily re-identify the data. All you do is put it up against some other public information. And then we have to see, is this the HIPAA definition, or is it a different definition? And to what extent does this apply?
You can sit there and look at one word and make a big claim, but you have to look at the entire bill and say, “This bill is about building something bigger.”
Modernization is the latest word for big government everything. So it’s the word that they’ve chosen to try and hide big government grabs, power grabs, behind using this handy word, “modernized.” But what it really means is big government is getting bigger.
So this is an infrastructure building bill. Any bill that builds the infrastructure, the surveillance infrastructure of the government, the analytic and research infrastructure of the government, the ability of a government to pressure the doctors to conform. And this is something about quality measurement. And you probably know this. Your audience probably knows this, that there are doctors who have actually turned the patients away because they refused to vaccinate their children on the government’s schedule, or just refused certain vaccinations.
And so they don’t want to screw up their quality metrics. And they’ve got pressure because now, about 70% of doctors are employed and they’ve got their other peers, and what the corporation will often do is say, “If you, as a group of doctors, have a certain percentage of your population vaccinated, you’ll get a bonus or you won’t get a demerit.”
And so there’s pressure, not only from the government, not only from the payers, but also from their peers to make sure that everybody gets vaccinated up to the government’s schedule.
And so you become a detriment if you want to do anything different. This is just a perversion of the patient/doctor relationship. The doctors who are employed, in particular, it really does seem, and you really see it in COVID, they’re not working for the patient anymore. They’re working for the payer. They’re working for the hospital. They’re working for the health system. They’re working for the health plan. They’re working for the government.
They’re not using their brains. They were trained to critically think. They have an oath to the patient. But it’s like it’s been thrown out of the window because of how big government has gotten.
Leah Wilson: And that’s exactly one reason, Twila, or one way, how the reporting requirements have changed patient care, that we are seeing denial of access to care in certain clinics if you can’t assist the doctor in reporting what they want to report—and that’s the fully-vaccinated, on-time schedule pediatric patient. And now, what does that mean if these reporting requirements extend, and if we have these attempted federal mandates? And now, the Coronavirus vaccine status is being reported in an accessible way.
So we have to consider these things—how reporting requirements have already changed access to care, quality of care, individualized care, and do we want things to happen that would even expand that vulnerability?
We heard this morning during the Senate Health Committee, which is the health committee in the U.S. Congress at the senate side, a quote from Senator Murray, who is the chair of that health committee. He said, “One of the things we are doing to get out of the pandemic is updating old and incompatible public health data systems.”
So how do you see that the Coronavirus response is changing the landscape for the individualized health data and for the vulnerabilities to our privacy?
Twila Brase: So this has been very convenient for those who wanted to build the systems—the fearmongering, the Coronavirus—it’s very interesting now that the CDC themselves is coming out and really saying that perhaps, there’s just a lot, a lot of people, a high percent of people, who died from other things, and that were reported as though they died from COVID.
And so they are all taking advantage of this to build the public health infrastructure, which really just means to build the government power over the people.
And I want to say one thing about what you said about the exam room because I forgot to say it, and that is that the patient doesn’t work for the healthcare system. The patient should never work for the healthcare system. The healthcare system is supposed to work for the patient. The patient is always a vulnerable adult even if the only thing they’ve got is a sore throat because no matter what, they cannot get it taken care of by themselves.
So they should never be working for the healthcare system. And you know, the doctor, the healthcare system, was all started on the basis of a mission.
So there’s the mission of medicine. But the mission of medicine today is being taken over by the business of healthcare, and this is what we are seeing when the doctors are no longer treating the patients like patients. They’re treating them like, I don’t know, widgets, or something that has to comply before they’ll get access to care.
This has never been the case. And we have seen this in the COVID craziness that doctors are not treating patients like doctors anymore. And it is a tragedy.
Leah Wilson: It’s becoming more and more apparent to the patient too because the issue has been common on a global scale, and so the stories are somatic of unable to access therapeutics, unable to get admittance to the hospital without being able to check certain boxes, unable to be triaged in a timely manner, being sent home without care.
And so we see our loved ones experiencing these common themes and we’re beginning to wake up to the effect of the healthcare business on the mission medicine, exactly like you said.
I have to ask you, in your experience, has the CDC ever had this breadth of oversight in the quantity of individualized health data the HR 550 would allow, and that this pandemic is paving the way for?
Twila Brase: So here’s what I always say—if there is a bill to expand collection of data, they don’t have it yet. So they have not had or they wouldn’t be trying to pass the law to make it happen. They’ve got this and they’ve got that, and they’ve got different things, and there’s money to goes the states to get the states to do certain things, and then sometimes the money goes away, and then they can’t get that.
And so they’re always busy building this system. But if there’s a bill to get more data, they don’t have it yet. That’s just the way it is.
Leah Wilson: That’s so simple and easy to understand, and something that we can use when we get responses from our senators and Congress that says, “This would help you.” Rest assured to say, “Oh, if there’s a bill, then there must be something changing.”
We don’t want our privacy to change. It’s already been vulnerable enough over the last few decades and during the pandemic.
So I want to reiterate some of the things that you’ve taught us today because we all know that soundbites are helpful in us having these conversations with our peers, with influencing our policy makers and with understanding the issues for ourselves and having our own convictions. So I love when Twila said he who holds the data makes the rules. So who are we giving this data to? That reporting requirements affect access to care, that the patient doesn’t work for the healthcare system. The system is supposed to work for the patient. So remembering that mission of medicine, which one of the most important things that she said was HIPAA does not protect your privacy, and you have the option of whether to sign that. And then if there’s a bill to expand the collection of data, then they don’t yet have that data.
So finally, Twila, I want you to be able to share with our audience from your experience because your path to being a full-time health freedom advocate is inspiring and very notable. And so it’s easy for us to feel like the problems are too big or too technical to understand, or that we’re too small to affect change. But you yourself chose to pivot from your public health nurse role to a full-time advocate. Now, you have an award-winning book and multiple efforts through your council, and you have really led this heartfelt charge to get back to the mission of medicine.
So what would you say to the person who was having their eyes opened during this time and feels the nudge to take a stand, but is terrified to do so?
Twila Brase: So I would say that the other side wants to keep you terrified. And people come to me and they say, “I’m scared to death.” And I said one of the things I was worried in the very beginning about the takeover of the healthcare system, and I realized if they took it over with the Clinton Plan at that time and put us all into managed care, that when they took over the healthcare system, they’d take over the country, and you can see their march in this direction.
But when you are actively engaged in stopping something, all fear goes away. And so never fear whatever the small thing is.
Leah, if you don’t mind, I’m going to raise a few things, so people can see them in case they wanted to have access to them because they are tools that people could use to just take a small step forward in engagement.
So the first thing is our book, Big Brother in the Exam Room, authored by me, and it’s all here like this because it doesn’t have an index. But the third printing is coming out, and it will have an index. And so you’ll be able to look up anything you want in the back.
So you can go to BigBrotherInTheExamRoom.com, and get on our list to be notified when the third printing is out.
The next thing I want to show you because I think it’s so critical is our COVID-19 Quick Reference Guide, which is meant to help everybody. COVID is still out there. It does still kill some people. And the first seven days are so critical for making sure that you get early treatment, and it tells you step by step, everything to do. The whole thing is really to save patients’ lives.
And that’s right in our homepage, CCHFreedom.org.
And the last thing is, if you want a doctor that cares about you, try looking in The Wedge. The Wedge of Health Freedom at JoinTheWedge.com is our online directory of cash, check and charge doctors who don’t work for insurance companies, don’t work for the government, don’t take any of that, and they only take cash, check or charge because they work for you. And we are working in 2022 to build a new system of freedom based on The Wedge, and we want to go all the way to having a cash, check or charge hospital. So stay tuned.
But we really want all of you to engage. Tell your legislators. A lot of them are really clueless about these things. They’re all thinking it protects privacy. It’s really around 2.2-million entities. That’s a federal number in 2010 of who can have access without your consent if those who hold your data choose to share it.
Leah Wilson: Wow. 2.2-million entities accessing our private health data. That’s enlightening. And thank you for sharing those resources with us. They are all beautiful efforts, and I want to reiterate that the book coming out is extremely helpful. I know that we hear people say day after day, “What about HIPAA? Where did our privacy go?” And often times, HIPAA is so misunderstood and our constitutional privacy rights are under-utilized and under-harnessed.
And so please go to BigBrotherInTheExamRoom.com, and get on that list to pre-order or pre-reserve your book with Twila, and then CCHFreedom.org is where you can get her resource for the COVID-19 protocols.
And I’m super excited about The Wedge because it is something that is so needed and it’s a gigantic project, so I’m glad that there is someone taking this on and creating the new systems to make the old ones obsolete because we don’t have to say yes to the tracking, we don’t have to say yes to the intrusion on our privacy. Because once we find ourselves in a situation where we feel like we can’t live without a system, we’ve been enslaved to it. So thank you for building The Wedge.
I want to also give you all the opportunity to go to StandforHealthFreedom.com and e-mail your senators today about HR 550, about the expansion of access to the immunization records. And when you go to StandforHealthFreedom.com, take action. It will be right there on HR 550.
And the e-mailing them, if they e-mail you back, keep the dialogue going. Use some of those talking points that you learned today to let them know that you are watching this bill, you have an opinion about this bill, and you want them to know the truth about it too.
So thank you so much, Twila, for educating us on privacy today, and I look forward to further work with you and your organization to expand health freedom.
Twila Brase: I’m so glad to be here. Thank you, Leah.