Patient Driven Medicine
Eat, think, and be wary
Before 1900 most of the patent medicines sold to consumers were frauds. Health care professionals did not fix that. The Food and Drug Administration came into being in 1906 because patients Harvey Washington Wiley and Alice Lakey fought for it.
That is the only way it will get fixed now too - patients making change happen. Maintaining the status quo is the overwhelming ambition of medicine. They want to keep the status quo that kills, injures and bankrupts patients so frequently that the patients who do not do what doctors tell them to do have a lower mortality rate than the patients who do.
The patients who want to change that invariably cannot see beyond what health care professionals see and so imagine that it simply is a matter of governing or motivating or educating or retraining health care professionals within the same system.
Consequently, the idea of creating a free market in medicine is swept aside. The viewpoint within medicine, vocalized more and more these days, is that the free market just hasn't worked. For instance, Abigail Zuger, M.D. in the New York Times said: "That is the fatal flaw in market-based medicinal care: Patients and their relatives simply cannot be savvy shoppers."
Treatment providers routinely make statements like that in the absence of any information to back it up - a habitual way of thinking in medicine.
One has to wonder if they do not know what a free market is. It is not second parties telling first parties what to do while third parties pay for it. Especially without the first parties having the ability to judge whether anything should be done in the first place. Patients have never been in a position to judge whether recommended treatments are better or worse than doing nothing. It is the first thing they need to be able to judge for them to be defined as savvy shoppers, and if they are to be safe.
To make that decision requires information about success rates. You cannot be an informed consumer without information about success rates. When has any patient ever had objective information about that?
There hasn't been a test yet of whether patients and their relatives can be savvy shoppers because they never have had the information necessary to try it. The information the medical information gives to patients only is the kind of information that would help a med student pass an exam. How one an operation is done versus how another is done is of no value. What would be of value is data about the long term results for patients who have had it both ways.
You cannot manage what is not measured
How out of touch health care professionals are is evident in what health care professionals believe about this issue. Just deciding which physician to go to in the first place cannot be an informed decision without such information.
For instance, 4.8% of physicians injure so many patients each year that they are responsible for over half of the medical malpractice lawsuits filed (see 5%). Can any patient figure out who those most dangerous physicians are? No.
Patients cannot even determine the likelihood of getting injured or killed. There is no market-based medical care without objective information on such issues.
As things stand now the well-being of patients depends more on the beliefs and interests of treatment providers than on patients' own knowledge. That is more than just unacceptable. That is outrageous. And it is the only way it ever has been and the only way it ever will be as long as health care professionals are the only source of information about health care.
It doesn't have to be that way anymore. It now is possible for the patient community to gather the information necessary to know better than to let doctors send them into death traps. As yet no one is gathering that information. Everyone continues to let health care professionals be the only source for information about health care. That is why things are as bad as they are without anyone being able to do anything about it.
It is time to move on
It is time for a paradigm shift in how we think about medicine. It is time to stop imagining that patients can or should trust health care professionals to guide them to safety and affordability. And it is time to stop trying to get health care professionals to do so by micromanaging them and "fixing" medicine like we have been trying to do for at least 160 years.
If it were possible to "fix" medicine, we would have gotten them to start washing their hands enough more than a century ago. No one ever has managed to get them to comply with mere hand hygiene requirements (see hand hygiene on this site). It has been 160 years since we started trying. There probably hasn't been a time in that whole 160 years when there have not been efforts underway to solve that problem. And it still isn't solved.
Putting patients in charge of insurance companies or hospitals is just more of the same paradigm - the nonsensical idea that this mess can be fixed by controlling and managing the people within it. No one can make them wash their hands (see Micromanage aka Myth #1 below).
What We Can Do
We can make it so that patients know when health care professionals don't wash their hands. It is time to make it so that patients know when and where the failures of health care professionals infects patients in any way so that patients can go someplace where they don't. When the patient community collects its own information about where health care professionals are infecting them (or otherwise injuring them), the well-being of patients finally will depend not on health care workers doing what they never have done, but instead will depend on the patient community finding out where patients are safe and well and solvent and where they are not.
Hamburgers do not cost $400 and cars that blow up are not sold to us without anyone knowing better to buy them decade after decade. Consumers make sane choices for themselves when they have enough information. Outside of medicine they are not told what to buy by a second party who provides only limited choices without objective cost/benefit information, and with a third party looking for excuses to deny coverage. Billable episodic transactional care widgets having more to do with what patients pay than anything they knew about or had control over is not a free market.
Putting patients in charge of insurance companies does not change the paradigm. It only puts in charge more people who don't know what the problem is. If they knew what the problem is, they wouldn't think they could fix it by stepping into management roles. Managing treatment providers will not fix this.
Abiding by Problems
Most of this site covers the problems. The rest is about how to accomplish the solutions. I wish that solutions were the only thing posted here, but insight does not spring merely from new thoughts. It requires understanding not just the problems but also what old ideas and assumptions are holding us back. Otherwise we keep abiding by them and they defeat us.
Most Don't Need to Understand
Max Planck, a famous scientist, said that new ideas succeed not because people see the light and change their minds, but because people die and new people grow up taking the new ideas for granted.
There isn't any point in explaining to health care professionals, or even most patients, any of this. Fortunately, we do not have to. All we need is about six of the right people, really only one to find the next two who help get the next three, to set up, in one limited place, an initial implementation of the solutions. Once it has been shown to work in one place, others will copy it. People are great at copying. And what can be copied can be franchised.
Solutions ..........|.......... Problems
......................... | ............ Myth #1
Patient Agency... | .........................
Nequamitis ....... | ........................
......................... | Conflict/Interest
........................ | ............. Loyalty
......................... | ..Wall of Silence
...... | .......Blacklisting
........................ | ....Psych of Care
........................ | .. 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. The only way to do that is with information that comes from someplace other than the vested interests in medicine.
Patient Driven Medicine
The Benevolent Overlord Model
Put ten doctors in a room to talk about patient safety and what do they come up with? In the last couple of decades they came up with the liability limitations for themselves that increase their position as the overlords of even more powerless patients.
Is anyone working on a plan that does not further entrench us in that paradigm? All of the talk about Patient Centered Medicine amounts only to trying to get overlords to think more about patients. The chief thing that does is further entrench us in the model that cannot even get hands washed enough.
Like with Transparency, the thing benevolent overlords are supposed to provide in spite of their conflicts of interest and the self serving lens through which they see the world. It leaves all of the information collection in their hands. That doesn't work.
When medicine makes patients better it is advertised. When it makes them worse 93% of the time no record is made of it at all. That is what overlords do when they are not benevolent.
Neither providers nor patients can make informed decisions without knowing what providers never have and never will report.
Ludwik Fleck, a physician, said that "to see" means to recreate a picture created by the mental collective to which one belongs. This is true of the medical community. For instance, it sees itself surrounded by frivolous suits rather than by the patients it has injured. And it sees as good for patients treatments that are good for itself no matter how bad they may be for patients (examples are on this site).
For patients to survive in spite of this requires information about medicine that has not been filtered through the self-interested mind-set of the medical community.
Objective information is the foundation for reducing the unacceptable rates at which medicine bankrupts, injures and kills patients. Patients must be able to learn where safety, efficacy and affordability lie. Doctors do not steer the patient community around even untrustworthy health care professionals and facilities, let alone around the incompetent and/or outrageously expensive. They never will. This is a job the patient community will have to do by collecting information that has not been filtered by the medical community.
Neither providers nor patients can make informed decisions without knowing the information that providers never have and never will report. Health Care Professionals do not have the objectivity necessary even to recognize such information. The information needed to make safe decisions can be collected only by people who are not in the employ of medicine.
Loyalty is the core operating ethic of medicine - not integrity, and not safety. When patients are harmed, disloyalty to colleagues is what ends careers. Failing or refusing to report problems does not end careers. Failing or refusing to help patients does not end careers. But being disloyal to colleagues does. And that loyalty is maintained through self-serving delusion, denial and silence about the people and problems harming patients.