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Patient Driven Medicine

by Joel

"...the weightiest and profoundest insight is furnished not by painstaking observation of what is separate and individual, but by the intensity with which the whole is comprehended..." - Arthur Schopenhauer

The Routine Paradigm

Habits are terrifically hard to break. People keep going around in the same circles regardless of the results. People inside and outside of medicine continue to focus on changing or controlling what medicine does or uses rather than protecting patients from the problems. Whether through legislation (usually without learning from those who have gone before, like the Millers and the Clarkes), regulation, education, observation (black boxes, cams in ORs, watchdog groups), motivation, incrimination, increased accountability, behavior modification, culture changes, or whatever - the focus almost always is on making something about medicine be different, like systems to force better behavior, even down to micromanaging what the people in it are allowed to wear.

Remember the Dark Ages

Myths and bad ideas can trap a community in a rut foreverThis is the box in which our thinking is trapped. It is taken for granted that this is the only box in which there is to think. When it doesn't work it is assumed to mean that we need more of it, more control, more training, more persuasion, more work on their culture, more efforts to guide their behavior. It is assumed that every little bit of that helps helps rather than hurts.

Consider the example of Ignaz Semmelweis. In 1847 he discovered the relationship between hand hygiene and outcomes for patients. He thought, like everyone else thinks, and focused on changing practices in medicine, in this case by trying to get caregivers to wash their hands.

Hope Truly Does Spring Eternal

155 years later a report called "Hand washing and physicians: how to get them together" by Salemi C, Canola MT, and Eck EK, (their spellings) covered five observational studies conducted in an ICU in 1999 and 2000. Rates of compliance with hand washing regulations by physicians were 19%, 85%, 76%, 74%, and 68%, respectively.

Jeannie Cimiotti, PhD, RN created the graphic below reviewing studies of rates of hand hygiene compliance among nurses, some of whom had been forewarned that their hand hygiene was going to be checked.

Non-compliance rates were from 30% when forewarned to 70% when not. Has there been any moment in the last century and a half when there were not ongoing attempts to get caregivers to practice better hand hygiene?

Hand Washing Police

Undeterred by 150 years of examples of how policing caregivers does not produce the desired results, in 2013 the CDC launched yet another effort. It is a campaign to do a whole lot more policing, this time by making every single patient a member of the hand washing police. When myths are the foundation, no amount of laws or reasoning or argument or work or support can fix the unmythical problemsPatients are supposed to ask doctors, when doctors enter the room, if they have washed their hands. Even if the doctor says Yes the patient is supposed to ask the doctor if the doctor would mind doing it again in front of the patient.

What about their clipboards? Their pens? Their stethoscopes? Cell phones? Do they ever touch their eyeglasses? Perhaps those should be sterilized while the patient watches too? Are they wearing neckties? Some infections are carried by spores that float on the air and can be transported by things like neckties.

Even More Powerful Watchdog Group

What next? Put doctors in straight jackets secured with padlocks to which only patients have the keys so that no doctor ever will touch anything without a patient-witness present?

Better Tools for Micromanaging

They have put hand washing stations throughout the hospital, but they didn't use them. They put identity chips on the physicians and nurses so that they could track whether or not they stopped at the hand washing stations, but the fact that they stopped at them didn't mean that they turned on the water. They installed sensors that detected whether they turned on the water, but the fact that they did didn't mean that they put their hands in the water.

Doctors are some of the smartest and most dedicated people in the country. They have gone through one of the longest and most expensive education and training periods there is. Then we micromanage them right down to their hand washing. How many times and in how many ways do we have to do that before considering whether the negative effects of micromanaging them outweigh the positive?

For one thing, they hate it

Who wouldn't? People always have hated being micromanaged. It is insulting. It breeds frustration. It makes people defiant and ingenious in finding ways to subvert it. Even if you haven't experienced that, just the history of the fact that we have been bringing all of our ingenuity to the effort of trying to get them to wash their hands for a century and a half without succeeding should be enough to understand the futility of thinking inside that box.

"Doctors even regard checklists as belittling bureaucratic intrusions." - Yinka Vidal

There are lots of other behaviors that it would be desirable to get from physicians and other health care professionals, but through what is virtually the only way we have tried, micromanagement, we cannot get them even to wash their hands. Do we need to keep going around and around in this circle to no avail for another century and a half?

Misplaced Faith

Could it be that our faith in laws, regulations, bureaucracies and other forms of micromanagement to make other people behave better is not well founded? Could it be that every little bit doesn't help, but rather hurts? We need caregivers to focus on curing patients. Instead, a large part of their attention is absorbed with obeying rules and regulators.

Bullying

Merriam-Webster Online defines "Micromanage" as to try to control or manage all the small parts of (something, such as an activity) in a way that usually is not wanted or that causes problems.

It is not wanted and it causes problems. If you ever have been micromanaged you already know this. Some just call it the bully approach. Isn't a century and a half of trying it long enough to conclude that it doesn't work?

Take the Pledge?

Actually, it is longer than a century and a half. I was introducing speakers at a patient safety conference where one of the speeches was a call to all of the caregivers in the audience to make the commitment, to take the pledge, to commit themselves to patient safety. It was difficult for me not to say, “You mean like Hippocrates did 2,300 years ago?” An oath, or a pledge, is just another attempt to fix medicine without disturbing the paradigm in which we think about it, this time by getting doctors to promise to behave better.

Hopeless pursuit of fairy tales

If your idea of how to make medicine Neither enforcement nor education has the effect we like to think it does on safety safer for patients has as its focus fixing medicine, like by changing their behavior, or controlling or regulating anything about it (for instance, trying to get medical boards to protect patients or trying to get anyone in medicine to report honestly and/or be transparent), the foundation of your thinking is the same one that has kept us going around in this same circle for 2,300 years without getting the results needed. Any law or regulation or poster or education or training or observation or "increasing of their awareness" only entrenches us more deeply in a paradigm that ignores the lessons of history.

The Benevolent Overlord Model

Micromanaging them entrenches us in what might be called the benevolent overlord model. It keeps all of the information and power in their hands. They never have behaved well enough to be trusted with that much power. They would have to be saints in order to.

People are not saints and cannot be fixed or managed or educated or incentivized into behaving like saints. Patients have to have the means to know who and what is good and who and what is not. Otherwise all we are doing is perpetuating the paradigm in which the well-being of patients depends more on the beliefs of benevolent overlords than on the knowledge of patients.

A time for hope
And a time for a reality check

If, after the thousandth time, something doesn't succeed, we should recognize that and not let our well-being depend on the hope that by some miracle the next time will be the first time it succeeds. Hope isn't always good. It can keep us going in circles when we need to stop going in circles.

After a thousand failures, isn't it time to try something else? Good outcomes might better be achieved by methods no one has thought of yet. Forcing health care professionals to abide by the rules of which we already have thought assumes we already have thought of everything. It prevents visionaries from taking us to better places than we know. If they come up with a Star Trek way to be sterile without washing hands, the goal has been achieved. Regulations forcing them to behave a certain way get in the way of finding better ways.

We won't get a Henry Ford or a Steve Jobs or a Jeff Bezos by encumbering them with so many regulations that compliance consumes the creative energy and ingenuity they could have spent figuring out better ways to care for patients.

Objective Success Rates

With other industries we are not in the position of having to hope that micromanaging their workers will make us safe because with other industries consumers are able to evaluate the work product. What to buy and for how much, and whether to buy anything in the first place. These are decisions that can be made intelligently with other industries because with other industries consumers have information from sources beyond the self-serving perspective of sources within that industry and can learn the who, what and where of quality and safety and affordability.

A Better Paradigm

What can protect patients from problems, like caregivers Pushing for transparency is what advocates do when they have no idea what they are doing.not washing their hands, is not trying to get caregivers to do it, but enabling patients to know when they don't. This should not be confused with the fantasy of doctors making medicine transparent (Myth #51 on my list of myths believed in medicine). Doctors do not produce objective information. No one in medicine does. Sunshine cannot come from inside medicine. If you think it can either you work in medicine or you drink as much of their snake oil as they do (which most patients unknowingly do).

Sunshine

Medicine does not provide the most important information patients need to know. It hides it. It doesn't even recognize which information is the most important for patients to know. That is covered in other pages on this site (for instance, Cullen, Majors, Wall of Silence, Blacklisting, and Mammography). Fortunately, we can get the information in spite of them, but that is neither here nor there if we do nothing with it other than bully health care professionals in vain attempts to fix medicine.

We need to stop beating them up for being human. We need to stop regulating them as though they are children. We need instead to create respectful ways to survive what they are (see Myth #57).

Micromanagement cannot protect us from incompetence, greed, lust, bad management, etc.

In spite of the monumental efforts medicine historically has made, and continues to make, to prevent honest information from getting out, it is possible to get it. That is what this site is about - how to get it. Once the patient community has it, for the first time in history medicine can be patient driven. There can be an intelligent community of patients knowing better than to seek health care for problems that will resolve on their own, and that will be able to discover when the suggestions of caregivers only are snake oil.

Change Paradigms

Look at any initiative you see that is supposed to make medicine safer or more affordable. If it keeps overlords in charge of the information (either in medicine or in bureaucracies in charge of medicine) remember that in the last 2,300 years that has not made medicine safer or more affordable. The overlords do not produce disinterested information. And they have interests in conflict with the well being of patients. 2,300 years is long enough for them to have proved otherwise. It is time for patients to learn the lesson that providers never will. They are working within the old paradigm and it is time to move on.

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I keep looking for how to articulate what is on this page. Below is starting at the beginning and trying again. And there is a third attempt below the next one.

Other industries are outcome focused. In medicine they are outcome defiant. Not only do they refuse to keep accurate data on outcomes, they defiantly disbelieve the results found when someone else does. So neither we nor they know the particulars about when they are harming patients. We end up succumbing to their self-interested viewpoint that focuses on processes instead of outcomes. We end up trying to micromanage that instead of doing what we do with other industries. With other industries we don't micromanage them. We just avoid what they do that kills us.

If General Motors makes a car that keeps blowing up, we do not micromanage GM workers to solve the problem. We stop buying that car until GM figures out how to make so that it doesn't blow up anymore. That's their job. We don't teach them how to do it. We avoid it when they don't. Because of that they have to stop blowing us up or go out of business. In medicine they don't. Why not?

In medicine 93% of what goes wrong is not reported to anyone anywhere. And no one else is collecting the information.

The health care industry kills and injures more people than all other sources of accidental injury and death combined. It also bankrupts more people than anything else. It is the most expensive and most dangerous place anyone in America goes. As long as patients are unable to find out the who, what and where of the problems, that is how it will be. And medicine is adamantly opposed to letting anyone find out.

Comprehending the whole in this case does not require scrutinizing medicine. It requires watching the patient community. Medical charts do not contain 93% of what patients most need to know. When things go wrong medical charts are a subjective interpretation of events when they are not intentional fiction. Instead of worrying about what is in the charts, instead of trying to get better information recorded, watch the patient community, lots of patients, over an extended period of time.

The worst things that happen to patients are the last things that ever appear in the record. We must start with the worst things or we only are pretending to try to protect patients.

When the patient gains a gut level understanding of how often diagnoses are wrong, how often treatment injures, and how often patients would have been better off not seeking treatment, they finally will have some of what they need to know to make informed choices.

Want to prevent a couple of hundred thousand consumers from getting killed next year, and a couple million more from getting injured badly enough to change their lives? Enable the patient community to have the wariness necessary to weigh the risks of seeking treatment versus what it would be like just living with the problem. Having blind faith in medicine to always be a good choice is ignorant and dangerous.

That ignorance cannot be cured by medicine. Medicine never will be a good source for the information necessary to erode faith in itself. I don't know why medicine treats that thought as a sacrilegious affront. When are humans ever good sources of the information necessary to know better than to trust them?

Ignorance is deadly

There are things everyone takes for granted but that are wrong. Including the very paradigm within which we think about medicine, like the belief that the people in it are objective and have our interests as their first priority. When they don't have objective information about their own success rates, how can they imagine that our well-being is their first priority? That is the first thing they would have to know for it to be true.

Prey

If you are buying a weed whacker, open consumer reports. They have engineering specs, the results of tests, and surveys of previous purchasers of the product. What do they have about hospitals and surgeons? Not much. Health care professionals can commit crimes against patients and still end up at the top of the lists that recommend the best health care professionals in the area.

Restaurants you can find out more about. For instance, you can call the health department to learn which restaurants have roaches in their kitchens. You personally don’t have to do that though because some suburban newspapers consider the roach-count to be news and publish it. But you don’t even have to read those papers. The fact that you are allowed to is enough, because the watchdogs will. There are citizens who have reasons to care. If your child has a weak immune system, you become a watchdog. You can telephone the health department to ask the roach-count at the lunchroom at the school your child attends. You can learn the ingredients of the food your child will eat at that school. You can learn its nutritional value.

What if your child needs an operation? What can you learn about the surgeon who is going to cut your child open? Can you learn how life Post-Op has been for the last thousand patients of that surgeon? Can you get accurate information about the success rate and a comparison of the cost of the particular procedure among all surgeons? What about the hospital where it will be done? There are pretenses of such reports, but the way they were created makes them unreliable guides.

There is more data on cows than on infections in medicineCan you get accurate information about the infection rate? You can get only pretenses of that too. Medicine is great at keeping such things out of the record. We need to be looking at the patient community, from outside of medicine, to get objective information about that.

As things are now you can learn more about a hair dryer you might buy than you can about the surgeon who is going to open up your child.

How do we pick a surgeon then? A physician recommends one. What can that physician find out? Not the actual infection rate. Not the success rate. Not the rate of misdiagnosis. Not even the crime rate except in extremely rare circumstances.

In a study of autopsies in one hospital about a third of the patients had been misdiagnosed. In other words, the treatment they received did not address the illness that was killing them. And treatment brings additional risk for no benefit when it is the wrong treatment. A third of the patients in that hospital would have been better off following the advice of an astrologer. Actually, the percentage might be higher than a third. We don't know about the patients who did not die despite being misdiagnosed. Autopsies do not discover who was mistreated and made permanently worse but lived. Most diagnoses are wrong (from JAMA). Most office visits end with a prescription (from CDC report). Doesn't that mean that most patients are exposed to risk and expense for no possible benefit?

The rate of missed or delayed diagnosis?

Misdiagnosis or delayed diagnosis is the most common cause of injury to patients. The rate of misdiagnosis would be an extremely valuable thing to know when choosing a hospital or a surgeon. But in medicine they don’t like records being kept of things that go wrong. So they don’t do autopsies anymore. Autopsies might be the single greatest learning tool medicine ever has had. So much can be learned from them to protect future patients, but they don’t do them anymore. No one knows the rate of misdiagnosis for the surgeon or the hospital to which you are being sent. It is not in their interest to know that. It is not in their interest for us to find it out. Why are we so accepting of that?

The sobriety rate?

There is a great deal of record keeping in medicine. It creates the appearance of there being accurate, detailed information about events in medicine. Speak to anyone in medicine about the inadequacy of current reporting and the inadequacy of information available about problems in medicine and they will balk and recite the volumes of data kept on each and every patient. But if the surgeon is drunk while operating, do you think someone records that? If the surgeon has been drunk four days a week for the past five years, do you think anyone will have said or done anything about that? If anyone does, they lose their careers, so they don’t. Between collegial loyalty and career preservation, drunks and other miscreants do not get reported in medicine.

What if you yourself know about a drunk in medicine? If your child comes out of surgery and you smell and see that the surgeon is drunk, can you warn people? If you do, legal actions by the bushel will descend upon you. They have a team of lawyers on salary (the risk management department) for that purpose. In many regions they also have liability limitations protecting them. You have none of that. They will bankrupt you to prevent your warning other patients. Why do we accept that? Probably because we have no advocates on our side to fight for us, like perhaps a State Patients Board.

Bushels of legal actions

What besides sobriety could you want to be warned about? How about the crime rate? Health care workers commit crimes against patients at different rates from one hospital to the next. Unfortunately, because of the nature of jurisprudence in this country, there is very little I am allowed to say about that. Bushels of legal actions were dumped upon me for having done so.

Which brings up something else it would be important to know –  the jurisprudence rate, the rate at which various hospitals or surgeons file suits against patients. They even sue patients to prevent them from telling you the likelihood of their suing you. Usually they just rattle the sabers of that as a threat and any lawyer to whom you speak about it tells you to cave in and be silent. It is not possible, at the present time, to find out how many patients were silenced by the mere rattling of sabers, but hundreds who have been threatened telephoned me asking for help when my phone number still was on this site.

We cannot know the infection rate, the misdiagnosis rate, the sobriety rate, the lawsuit rate, the crime rate, or the jurisprudence rate. How about the success rate? Surely someone is keeping track of the percentage of operations that succeed, aren’t they?

Absolutely not

I have spent a many hours trying persuade them that they should. They will have none of it. They focus on processes. If they get the process right, they feel they have done their job regardless of the effect it actually has on patients. It is not in their interest to keep track of the effect they have on patients and they don't in any objective way. They take umbrage at the suggestion that they should.

So what do we do in response? Do we set up the systems that would enable us to know better than to go where medicine is ineffective or financially ruinous or just plain dangerous? No. We, the people and the government, try to fix medicine. Why do we not learn from the experience of the last couple of centuries of trying to do that (see hand hygiene on this site)? Instead we want to pass laws. We want to get press. We want to get masses of patients to get on board. We want to educate, train, persuade, manage and otherwise change treatment providers.

The Paradigm in Medicine

None of that changes the paradigm of ignorant and powerless first parties getting their information and guidance from powerful second parties with whom they have conflicts of interest, while third parties pay the bill unless they can find a way not to.

Instead of working on that, we continue to go around in the same circles we always have. Patients recently injured arrive to the cause and repeat the same efforts that numerous others have before them. They never check to learn from the experience of others. They repeat the same futile efforts until they burn out and disappear. But what they do not work on is changing the paradigm. For instance, if they want more information they imagine they can get it from people in medicine. They call for more transparency or more communication or whatever.

Health care professionals being in charge of collecting the information and educating you so that you can make good choices is what got us where we are and will keep us here forever.

Your secure your well-being by depending more upon the beliefs of health care professionals than on knowledge of your own.

Nothing in medicine accurately can be called patient driven or even patient centered as long as all the information comes from medicine.

I've tried to make this point a number of ways. What's below is starting at the beginning and trying again.

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What is below is another way of saying what I said above and also said on the home page. I keep trying to figue out how to articulate it. I'm not sure if any of the ways do, but the way I say it below does have information the other two ways do not. It was the original explanation on the page above, but then I wrote a new one that now is up there.

That is about 1% of what we need to know

Half of U.S. health care is unnecessary, sub-standard or inappropriate (Health Research Institute). Which half? It is in the interest of providers not to know. So they don't. So we don't.

They are not the ones paying for that. You are. And you are getting worse care than you understand. It is so much worse that patients who trust their doctors and do what they are told have a higher mortality rate. The patients who do not trust their doctors and do not do what they are told have a lower mortality rate. Someone should put that on a tee shirt. Patients who do not do what they are told have a lower mortality rate.

That can be changed only by the patient community. The patient community has to establish the mechanisms that will enable them to get the information that caregivers never will get and the government never will be able to find out.

They are not saints

It is not in the interest of the caregiving community either to be aware of the information necessary to make that change or to let us find it out if they do. That conflict of interest always will be there. No number of attempts to change their culture and/or alter their behavior will fix that. They never will be a good source for the information patients need.

We can get it without them

Consider that one of the mantras in medicine is "don't go looking for problems." Seriously. The people who believe that your well-being is their highest priority have rationalizations for not looking for the problems that are injuring patients.

For instance, surgeons installed metal on metal hip devices for ten years without "going looking" for the host of problems caused by them (including poisoning from the metal debris that caused heart failure) until one of the surgeons who had been installing them had one installed in himself.

The patient community must discover these things itself

When a surgeon experienced the declining health so many patients had suffered he finally went looking for the problem. He discovered what had been wrong with metal on metal hip devices all along. He discovered what could have been discovered years earlier if anyone had gone looking for them. He began a campaign to educate other surgeons about the problems he found, but just like with Semmelweis and hand hygiene, the new information did not motivate the other surgeons to alter their practices.

That is normal human behavior

When the patient community starts to learn these things itself, the well-being of patients no longer will require humans with vested interests to put the interests of patients ahead of their own. In devastatingly important ways they never have and they never will, but finally patients will know when they don't and can avoid the problems.