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Eat, Think & Be Wary

To change something, build a new model that makes the existing model obsolete.
-R. Buckminster Fuller

I once decided to write the Top Ten Myths believed in medicine. I stopped when I got to number 70. But the first one was:

Myth #1: The benevolent overlord model can work.

It Never Has. It Never Will.

It is the only thing anyone works on. All anyone working on patient safety tries to do is make the benevolent overlord model work. It never has. It never will. It is time to move on.

The benevolent overlord model is: "Second parties with vested interests telling ignorant first parties what to do while third parties decide whether and how much to pay for it." That is two of Dracula's children having inherited control of the blood bank. It does not matter how many laws you pass, how many bureaucracies you create to manage it, how much you alter its culture, or what kind of education you bring to bear on it. Self interest rules in the end. Dracula can never be a good manager of the blood bank. The equation must be altered so that the well-being of patients does not depend on happending to fit in between the self-interests of second parties with conflicts of interest.

The Robert Wood Johnson Foundation has a grant available to anyone who can figure out how to make patients have more faith in their doctors. I know how. Gather information about doctors that is accurate enough for patients to be able to figure out who is safe and who isn't without having to get injured to find out. Under current circumstances every doctor must be worried about because patients have nothing to go on but ignorant faith.

Faith is necessary only when
there is no accurate information

There are things you cannot truly understand until you've watched your primary physician rearrange his beliefs about you in order to secure his own emotional comfort at the expense of your physical well-being. There are some things in medicine, like the code of silence, that are not secret anymore, at least not to anyone who is paying attention. But there are other things that almost no one is paying attention to. Like the ability of health care professionals to choose to believe what it is in its own interests to believe regardless of the outcome for patients and yet rationalize it as being the best thing for patients. And to do this while persuading the government and everyone else that their beliefs are an accurate view of the world.

Trying to change that is one of the games played by people who cannot think outside of the box - the box that is the problem. Nothing can make it okay for second parties with vested interests to govern first parties who have no abilility to determine the odds of success while third parties decide whether and how much to pay for it.

Thinking inside that box keeps us in that box. It is time to change our focus.

Instead of trying to make dracula better at managing the blood bank, it is time to focus on making it so that patients can tell when dracula isn't doing a good job. In short, it is time to focus on enabling patients to protect themselves rather than on fixing medicine so that they don't have to. Let medicine work out its own problems in response to patients who know better than to become victims of them. If patients know where the problems are they can avoid them and let the dangerous people and places in medicine respond by fixing themselves in order to get patients to come back. Like the way it is in other parts of our economy.

This can be done by gathering the information necessary to know what treatments are worthless, where the infectious death traps are, what bankrupts the most patients, which physicians cannot be trusted, etc.

This is information that cannot be collected by anyone working in medicine. They do not have the perspective to do it. And this is one of the hardest things for people to understand. Somehow patients have an overwhelming faith in health care providers to be saints. When they only information patients have is information that has been filtered through the prejudices of health care, the only information we will get is that which supports that faith.

The information patients need cannot be collected by people who have as one of their mantras that there are no bad people in medicine. In medicine they even say that they are not looking for bad operators. So they do not look for them and do not protect us from them. They do not even protect us from bad treatments.

As Garrick Sitongia put it, "An apt analogy . . is the Borg from the TV show Star Trek Next Generation. . . No matter what planet a member of the Borg is from, once they are assimilated . . . they show machine like loyalty to the collective they now belong to.

"[they] fiercely protect any member from non-members. . . resist any change, instead expecting outsiders to accept being dominated by them.
" Thanks Garrick.

At least since Hippocrates 2300 years ago the hero physician has been the model that was supposed to make patients safe. They still keep coming up with documents of various kinds, like patient safety initiatives that don't even mention the most fundamental interests of patients, that they think will change everything if doctors sign them. 2,300 years of that is long enough to figure out that what Garrick said is never going to change.

They are humans with vested interests and no skin in the game. They never have been and never will be objective and selfless enough to collect the information patients need in order to make safe decisions. All of the information we have about medicine has been sifted through the filters of their perceptions, but they are Borgs. They do not report what goes wrong most of the time. And they don't even know that. The lenses through which they view their own experiences are so thick that they do not even understand that.

Metal on metal hip replacements? Morcellation? 4.8% of physicians responsible for more than half of all med mal suits and patients have no ability to learn who they are? Surgeons under the influence but no one in medicine reports them for fear of losing their own careers? Thousands of patients dying each year from post-surgical blood clots because it would take too much time to put compression stockings on them? Nurses failing to maintain hand-hygene requirements 70% of the time while thousands of patients die from infections? Injured patients discovering that there is no record of their injuries? And then discovering they cannot get treatment for them because no one is willing to make a diagnosis the creates a record of them? Are we not dealing with a community of Borgs? Enough.

Enough.

Enough. The collective experience of the patient community contains enough data to enable future patients to avoid all of that. Without the help or interference of the medical community, the patient community can collect the data necessary to change the game. For instance, pick a specific set of preconditions for a finite community of patients. Watch the who, what, and where of being made better and being made worse, and compare it to people who sought not treatment at all. In a few years it will become clear if someone or something always makes patients with certain preconditions worse. Upon discovering that, just direct future patients with those preconditions to where they are more likely to get better, and continue to watch.

Among the 4.8% of physicians who are responsible for more than half of the med mal suits, there are physicians who respond to certain preconditions with the same treatments and injure those patients everytime, hundreds of times in a row. Just start with that.

This has been going on for decades if not forever. The medical community defends it. They do not fix it. If left up to them nothing will change. Maintaining the status quo is the overriding interest of health care professionals. That overrides making patients safe.

Watching Patients

In an article called "Long-Term Opioid Use Could Depend on the Doctor Who First Prescribed It" by Jan Hoffman in the Feb 15, 2017 issue of the New York Times, Dr. Michael L. Barnett, an assistant professor of health policy and management at Harvard T.H. Chan School of Public Health, and the lead author of the study, said the point of the findings was “not that high-intensity prescribers are necessarily irresponsible in prescribing opioids to certain patients.” But, he said, “Their patients have worse outcomes that we weren’t aware of before.”

In what world is it not irresponsible to be unaware of how bad the outcomes are for your patients? In medical world. That is the rule in medicine. One of the mantras in medicine is "Don't go looking for problems." Looking for problems would upset their status quo, so they do not monitor the outcomes for patients.

Patients do not understand this. Neither does anyone in medicine. No matter how many times it is repeated, no one in medicine believes it and no patient appreciates the extent to which not being aware of outcomes for patients prevents health care providers from learning from experience.

The patient community has to do that learning itself in order to become safe and solvent. That is what this site is about - understanding what is necessary to make patients safe and solvent. And how to do that by collecting the information no one in medicine ever will be objective and selfless enough to collect.

The government cannot do it. Doctors cannot do it. Nurses cannot do it. Third parties have their own interests. Of course, that is just common sense, but in medicine common sense has been trampled by ignorant faith.

We cannot afford this ignorance

The identities of the 4.8% of physicians who are responsible for more than half of the med mal suits will never be revealed to us by our hero physicians. They will continue to let us discover them by getting injured. And then refuse to put in the record how we got injured (and are in denial about that). Enough.

Where are most infections caught? Where are most patients bankrupted? Where healed? Where killed?

Currently we have nothing to go on but hope and ignorant faith in treatment providers to protect us. They protect themself first and us second. They rebell fiercely against the idea of changing that. No one collects the data necessary to protect patients. Ignorant faith is the biggest problem in medicine, both on the part of treatment providers and patients. We need for both parties to be less ignorant. Medicine is dedicated to making sure patients remain so with regard to the most important things patients could know about medicine. Like success rates. Medicine will never be an objective source for such information. The patient community will have to collect it itself.

It is a Data Problem

Solving this does not require passing laws, getting press, reaching the masses, or changing the medical industry. It needs only one person who is the right person to be the first one to recruit the team necessary for monitoring patients, fund raising, managing, and such, and then select the locality in which to set up the first entity that works on developing the means for gathering, digesting and making available the information available to patients in a form easy for them to use.

That Low Hanging Fruit

Twenty years ago similar information coupled with all the rest of what could be gathered could have revealed that there were patients developing blindness, dementia and heart failure, and what they had in common was having gotten metal on metal hip replacements. With the way medicine views the world, they didn't notice. So metal on metal hip replacements were put in patients for 20 years.

We still would not know about the problem if a surgeon hadn't gotten one for himself. When began doing his best to inform medicine about the problem, surgeons still earned their livings putting them in patients, patients who have not been informed that metal on metal hip replacements frequently produce toxic levels of cobalt in the bloodstreams that lead to severe health problems and even death. If one of the patients in your group of 50,000 were scheduled to get one, who would you think it most important to inform, the surgeon for the umpteenth futile time or the patient who was not informed by anyone in medicine about the downside?

How else can this be regarded other than as one of the ways the institution of medicine crushed patients for 20 years. Millions of patients all around the world were kept ignorant of information about the outcomes of previous patients. Do you think one single doctor in 20 years, while educating patients to enable them to make informed decisions, ever told a patient about the toxicity and the heart failures associated with metal on metal hip replacements?

Have you ever had a doctor tell you about the association between anesthesia and dementia? If you cannot get a procedure under a local anaesthetic instead of a general, you should be calculating the risk of fixing one problem only to increase the odds of getting dementia. Sometimes it is better to live with the orignal problem. Especially if the "fix" is one of the many things that don't really fix the original problem well or for long - something else patients are unlikely to learn from treatment providers.

Better Sources of Information

More than half of all diagnoses are incorrect. Where? Is it worse some places than others? Is it more common for some conditions than for others? Patients need to know.

In one study done in a hospital by doing autopsies, it was determined that about a third of the patients who died had been misdiagnosed. The illness that was killing them was allowed to do that while the patients were treated for something they did not have. Watching the outcomes of patients with certain preconditions has the potential to identify misdiagnoses before they become fatalities.

The data must be collected from outside of medicine

When this is seen to work in one place, others will want to copy it. Humans who are resistant to new ideas often are enthusiastic about copying something that they have seen work.

When there are ten such groups functioning they will learn from each other and provide increased sample sizes viewed with additional sets of eyes in order to get better at this. But just in one locality, is there one specific nurse who was on the scene for every fatal infection caught in a specific hospital in the last five years? Or is there a facility that, with or without knowing it, is dispensing a pharmaceutical that is fake? Medicine is unlikely to figure that out because they don't monitor outcomes and would be the wrong people for objective information about that even if they did.

Hippocrates would have figured it out. He believed in learning everything he could about his patients, even which way their houses faced and which way the prevailing winds blew. I think he would have wanted to know everyone who had been present for every fatal infection caught in the last years.

Wouldn't you want to know if the drug that was supposed to save your life hadn't saved anyone elses in the last several years? Don't you have a right to know? Don't you think patient advocates should know?

A more verbose attempt at explaining this can be seen at Patient Agency link.

 

Solutions ..........|.......... Problems
|
......................... | ............ Myth #1
|
Patient Agency... | .........................
|
Nequamitis ....... | ........................
|
......................... | Conflict/Interest
|
........................ | ............. Loyalty
|
......................... | ..Wall of Silence
|
.................. ...... | .......Blacklisting
|
........................ | ....Psych of Care
|
........................ | ... Transparency
|
........................ | .. Charles Cullen
|
........................ | Orville L Majors
|
........................ | ......... Kayshyap
|
........................ | .............. OSMB
|
........................ | ..... Semmelweis
|
........................ | . Benjamin Rush
|
........................ | .... Government
|
Patients Boards. | ........................
|
Campaign ... | ..................

"If we can get just 10% of people to be smart patients, it will change the system." - Mehmet Oz, surgery professor.

 

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With regard to the institution of the medical industry, I suggest that we do what was done by Hippocrates, the founding father of medicine. It can be done only from an objective position outside of medicine. Otherwise we have done nothing but allow medicine to coopt the effort until it is only another pretense.

What Hippocrates did was get to know everything about his patients - the water supply at the patient's residence, which direction the patient's residence faced, which way the prevailing winds blew, the patient's diet, family, blood, tears, sweat, etc. With data science we can do that again and look for what patients with similar conditions have in common. Like if in the last year, within the group of, say, 50,000 patients that you are monitoring, 6 are declining with symptoms that include dementia, blindness and heart failure and the one thing they have in common is metal on metal hip replacements.

Eat, think and be wary

How can patients be wary, or give informed consent, when they cannot even learn that the treatment being recommended has a history of poisoning patients?

For 20 years millions of patients around the world received metal on metal hip replacements that poisoned them with levels of cobalt that were toxic beyond what would be tolerated in industry. There were treatment providers who knew about the toxic levels in the blood, but who decided it would be all right. Decisions and policies in medicine frequently are based on nothing more that kind of than self-interest.

That is why no one monitors outcomes - self-interest. So no one checked to see if it actually was all right. It wasn't. But for 20 years no one in medicine gave any of their patients information about that to help them make their "informed" decisions.

It is time that we began monitoring outcomes from outside of medicine so that they are not monitored by people who think that toxic levels of cobalt probably will be all right for patients.