See also: State Patients Boards
You are three times more likely to die in one hospital than another. The fact that one hospital is good at cardiac care does not mean it is good at diabetes care. This has been studied (see PLOS One, December 14, 2016). But you cannot learn such facts about where you are being sent. All you can do is roll dice hoping to land in the right place. The quality ratings of hospitals currently available are wrong as often as they are right, which means they are useless. I’ve covered that elsewhere. None of them collect the information most necessary to fix that.
The collective experience of patients contains all of the information patients need to stop getting injured and bankrupted and mistreated in medicine. It just needs to be mined, digested and organized by people who are on our side.
This can get mislabled as “big data” trying to fix the world, but it is not health care’s big data. It merely would be counting. For instance, where are patients dying from a current MRSA epidemic that is not being reported? Hospitals do not close their doors at such times. They cover up and proceed as usual.
What is the five year outcome for patients with a certain device implanted versus a different brand versus people who opted to live with the original problem rather than subject themselves to surgery?
Where are people with your symptoms dying and where are they not dying and perhaps even getting better?
(Of course, useful data can be added to the mix from other sources. Like patients routinely hook OnStar to their electronic health records so that the ambulance on the way to their car accident has their health records before it arrives. A new Community Patient Agency could be connected to that too. Microsoft HealthVault is a web platform that stores health and fitness information. Indivo offers personally controlled electronic medical records. PatientsLikeMe provides technology that helps to collect data from patients. And there are others who are making tools that can help, like Bill Syrjala’s Med Grid. And there are pockets like Jonathan Kopke with the “Every Child Succeeds” database, keeping track of forms that nurses and social workers have collected during 470,999 home visits. He also created a Web-based program that allowed transplant centers to locate matches based upon blood type, age and immune system proteins among many other factors in order to speed up finding suitable organs quickly. Over time it might be possible to coax a way for such efforts to record information in a way accessible to us. What else might be found along the way?)
Just collecting what no one else collects, objective long term data on the outcomes – how patients are now, would be a game changer. There is low hanging fruit there. There is data that is not from gray areas.
The government cannot do this. During Vietnam the CIA could not even get accurate data sent back by its own people in the field, and they didn’t have an armada of health care professionals and their organizations lobbying them.
This has to be done by people who are not paid by government or hospitals or insurance companies. Its resources must come exclusively from patients so that it is beholden to no one else.
A conclusion that it is difficult to prevent people from jumping to is the idea that the information collected will be provided to medicine so that they can clean up their act. That has nothing to do with this.
This also has nothing to do with posting information in the press or on the internet where patients in general can find it. This has to do with our seeing that you have an appointment to take your teenage daughter to Dr. X for annorexia and we know how that went for the last 75 teenage girls taken to him for that. If it didn’t go well, we might suggest a different treater or a different treater.
This is not Yelp surveys. The most dangerous physician in the country can get good reviews from patients by being charming, running a good waiting room, and listening.
Surveying patients cannot tell you if the surgeon, who is replacing the one you had been scheduled to see, ever performed this procedure before? You asked and this new surgeon’s response was that his group has done this surgery hundreds of times. Wouldn’t you like to be able to find out that he, himself, never has? Wouldn’t you like to be able to find out that his last 30 patients all needed readmittance for additional surgeries? Wouldn’t you like to be able to look up information showing that even though, upon being asked, he told you that he thought that the surgery usually cost $30,000 in his group, the average price for the last 75 done in his group really was $180,000?
You don’t get this kind of information from patients filling in Yelp surveys. Patients frequently cannot even figure out what their own procedures cost with the way bills come in month after month for the next 18 months. And patients don’t know the experience of anyone else to compare their own to.
Shouldn’t Doctors Educate Patients?
Historically, doctors educating patients has not protected them even from serial killers in medicine. There is low hanging fruit and it is outrageous that patients are not protected even from that.
This kind of information could enable patients to make decisions that actually are informed for the first time in history.
This needs to be done first for one reasonably sized community to learn lessons and to demonstrate that it can be done so others can copy it and improve on it in other communities, one community at a time, the same way franchises spread.
Did you know that at the time of this writing a new Kentucky Fried Chicken opens in China every 9 hours? When something works, and people want it, that can happen. What do you think would have happened if instead it were a government program to establish food purveying centers every 9 hours? What would that food be like? How many interests would have their hands in those pots influencing government policy? Even farmers would influence what got served. School lunch programs in the USA have to serve milk products to populations of kids 90% of whom are lactose intolerant.
People have so much faith in government to be able to solve problems by passing laws and establishing agencies and such. There already are laws against sex abuse, but when medical professionals are guilty of it, the medical industry protects them, the churches affiliated with their hospitals protect them, the state medical boards to whom affected patients complained protect them, decade after decade.
This isn’t about governing or regulating or educating medicine to it better. It is about protecting patients from where it isn’t. Let medicine respond to that.
It is naive to let people with tremendous power
be the only source of information about themselves.
When was the last time you could compare prices and success rates in medicine? Can you log on and find a chart showing how much the same treatment or procedure costs in different facilities? No.
A blood cholesterol test in one hospital cost $10.
In another it cost $10,169.
Can you find data showing which tests produce the most false positives, the most unnecessary surgeries, the most permanent disabilities for no gain (at least to no gain to anyone other than the people selling the tests)? No.
A basic metabolic panel costs $35 in some hospitals but thousands in others, over $7,000 in one.
Can you find data about which insurance policies most frequently put caregivers in the position of having to change the diagnoses and treatments to fit what insurance will cover? Can you find data about which insurance companies most frequently deny claims (this doctor says that denying legitimate claims was how she advanced her career)?
Costs for a routine appendectomy ranged from $1,500 to $182,955.
Can you log on to find a comparison of the success rates of facilities or personnel or treatments? No one has honest data on the success rates of any of this. The little data that does exist you are not allowed to have.
Safety data can vary as widely as costs.
For instance, according to the National Practitioners Databank 4.8% of physicians are responsible for more than half of the lawsuits filed. Can you give informed consent when you cannot be informed about whether your doctor is one of them?
4.8% is 41,000 doctors. They are in every community in the country, some in yours. Since medicine is in charge of the information you are not allowed to know who they are. It is information that is paramount to your well-being, but your caregivers and your government do not allow you to have it. Instead of protecting you from them, they passed liability limitations to protect them from you when they injure you.
Do we have any choice other than to follow the guidance of people who won’t even warn us about sociopaths with medical degrees?
If we knew who they were we would not go to them, at least not for the things at which they are so bad that they keep injuring patients. The people in charge of your health do not recognize your having this information as being part of any solution. They are in charge of your well-being. Can they keep you safe when they don’t have this information themselves?
Fortunately, we could figure out on our own who the 4.8% of dangerous doctors are (if we collected our own data), and figure out who are the ones who have such good social skills that they didn’t get sued and so are not on that list but who are equally, if not more, dangerous. Medicine cannot. Serial killers in medicine have managed to keep doing what they do because it is not in medicine’s interest to protect patients from them.
That always will be a problem. They never will be objective and selfless enough to fix this.
“An ounce of data is worth a thousand pounds of opinion.”
Ashish K. Jha
Sometimes it is the personnel and facilities that are sick. Does getting treated by a specific doctor cause lots of patients to miss work, lose jobs, get divorced, and require lifelong care after treatment that would not have been predicted based on everything known about his/her patients prior to that office visit? There are doctors who do that.
It is a violation of federal law for anyone to tell you who they are based on the data in the National Practitioners Data Bank. The doctors in your community most probably think those dangerous doctors are excellent physicians. Even if they know they are not, they will never tell you. The medical community turns on them if they do.
But we can figure who they are, and more, without them. With them we are neither allowed to nor able to, partly because patients have faith beyond all reason in medicine. They have faith in medicine to protect them and to solve these problems. When patients think that way, they do not recognise even the problems that ruin their lives.
Medicine is the wrong place for faith
To make a few dollars your doctor will recommend care that unnecessarily puts you on a colostomy bag for life rather than less profitable care that doesn’t (read it at this link – if you were going to read only one page on this site other than the one you are reading now, make it that one).
They can be that self-interested, and persuade themselves that they aren’t, because patients do not have the information necessary to be too wise to let them. That is the problem we need to fix.
It is possible for the patient community to get the information necessary. No-one in medicine can. Health care professionals are better off when no one knows who or what is good, and better off when no one knows who or what is too expensive, which is why their systems ensure that no one can.
Health care professionals have so much faith in themselves that they do not see this as a problem.
Five cent drugstore niacin pills were billed at $24 each in a hospital
No amount of governmental control can make medicine safe and affordable in the absence of such information. Even with it, government regulation only can alter the distortions caused by their regulation. But if patients have that information there is much less need for governmental control in the first place.
Health care professionals balk at hearing this and protest that it is not true. But does anyone in medicine know if one specific nurse was involved in every fatal infection caught last year in the hospital to which you are about to be sent? Medicine makes sure that no one knows (see Cullen).
Fortunately, it has been demonstrated that the patient community can get the information without the participation of the medical community or the government. With the participation of medicine, the patient community never will not get it.
“However beautiful the strategy,
you should occasionally look at the results.”
– Sir Winston Churchill
Consider the case of the physician who was groping adolescent girls. They and their parents had been to the police and the state medical board and done everything screaming mad parents could figure out to do. The nurses working for him did not report it. He manipulates nurses into leaving the room to take care of something, like to get a file, leaving no chaperone with him in the presence of young women for long enough to grope them (a real case in my community).
Currently there is no place for you or your daughter to report that (see Kashyap, for instance), at least no place that will do anything about it, or even believe you and the other parents complaining about it. Not the police. Not the state medical board. No place. Health care professionals have pat answers about what they regard as obvious places. They are that out of touch. The experience of patients all over the country in response to such events is that there is no place to report these things. There should be some place.
We were too naive to ignore their counsel
and now we have embraced their ignorance.
– Charles Bukowski
A Community Patient Agency could be that place. This is information that no one in medicine collects or reports (see medical reporting). This is information that no one in medicine believes when you report it to them (see OSMB and Blacklisting).
Surgeons routinely create records that say that their operations were perfect with no complications even when patients are disabled by them. There are injured patients out there screaming at the top of their lungs trying to get anyone to put in the record an honest account of what happened to them, but no one will. They need an agency that is on their side and not only will listen and learn from it, but will use what is learned to protect the next patient, rather than protect and enable the perpetrators of those injuries as currently is the case.
Try to find a doctor or nurse who is not against that
Most injured patients do not understand what went wrong so they believe it when health care professionals persuade them that they are lucky to have been in such good hands or it could have been much worse, even when the nickname of the caregiver in question is Hodad (stands for “Hands of Death and Destruction”). It is a nickname sometimes given to the doctors who are recognized as being major sources of patient harm because of how routinely they injure patients. The patient community never will know who they are without someone who is on their side and who is outside of medicine, like a Community Patient Agency, monitoring medicine.
With a resource like that, even patients who have been duped into believing that bad care was good care can be sources of good information. When knowledgeable people who are on their side interrogate them about what happened to them in medicine, patients reveal information that they had no idea was an indication that anything was wrong. Often they never reported it because they didn’t know it was something worth reporting. They never looked at their own medical records to see that their records don’t mention that they were disabled, or whatever, let alone that their records don’t reveal the events that the patients can recount.
Patients usually don’t know what events are worth recounting. They need a knowledgeable guide who can recognize the events as the the causes of the patient’s injuries.
Third-party purchasers of health care provide little financial incentive for health care organizations and providers to improve safety and quality.” – Lucian Leape, 1999 IOM study
Health care workers are aware of more information than patients are, but will report almost none of it when it is negative. Patients are aware of less, but will report all of it when involved in this scenario, in the end reporting a greater quantity of accurate, verifiable information than can be gotten from the health care workers (see Patient-Identified Events).
The idea of a scenario like this sends caregivers into paroxysms of paranoia (in my experience) over the possibility of frivolous complaints. I have never witnessed a similar level of concern for the patient harm problems caused by not reporting that information. I have never witnessed a similar concern on their parts about the harm caused to patients by caregivers creating records that are frivolous misrepresentations and cover ups when the truth does not portray the caregivers as saints.
4.8% of physicians are responsible for more than half of med mal lawsuits
Do you think anyone in medicine will tell you which 4.8%? If they were saints, they would. But they won’t. And then they regard the complaints of the patients injured by that 4.8% as frivolous.
Just tell us who the 4.8% are and we won’t go there. We don’t want to get injured. We don’t want to end up in a lawsuit. That would eliminate half of the grievances and lawsuits.
Instead they pass laws that make it so that that dangerous 4.8% of physicians can continue injuring patients forever without patients being able to do anything in response.
One of the reasons they won’t tell us is that frequently they don’t know themselves. It is not in their interest to know, so they don’t. What is in their interest is imagining that all those lawsuits and grievances are frivolous. So they never will protect patients like a Community Patient Agency could.
Although sometimes they do know. A Community Patient Agency would, among other things, use what some call the Global Trigger Tool, a well-known method that in one study uncovered 354 instances of patient harm where the doctors and nurses had recorded only 4 “events” (do they ever record “harm”?). But the agency also would track the patients themselves, not just their records, to see who cures patients and who doesn’t, and who is just plain dangerous, and discover who those 5% (rounded up) of dangerous doctors are so that unwitting patients don’t have to go to them to discover it by sad experience.
Comparative cost and quality information
If you want to see the cost of medicine drop make it so that consumers can shop for better prices.
To make it so that they care about prices, get a few insurance companies to try offering patients who have access to this kind of information a reduced rate in exchange for a sliding co-pay – not a punishing one, just enough to motivate them.
For instance, the procedure might cost $1,000 in one place but $10,000 in another. The co-pay for the first one might be $100 and for the second one $300, not enough to be punishing, but enough to be worth thinking about.
I have a high deductible. Price matters to me. I was so sick of how much I was charged for simple things like MRIs that the next time a doctor ordered one for me, I shopped around. I got it for 20% of what the hospital was going to charge.
If you want universal coverage, make medicine cost 20% of what it costs when no one can shop around to compare price and quality.
Another reason that insurance companies would want to give a reduced rate to people in this program is that doctors overtreat, especially the elderly. Most of the things for which patients seek care would resolve themselves on their own with no treatment. It is not in the interest of medicine to enable patients to find that out without paying health care professionals something first. They keep finding ways to earn livings whether patients need what they are selling or not.
A Community Patient Agency could be a source of data about which ailments are better left alone. It could be a source of accurate information on the odds of getting better with and without care for specific symptoms. That is information that could lead to patients seeking less care.
One of the first duties of the physician is to educate the masses not to take medicine. -William Osler (The Father of Modern Medicine)
It is in the interests of physicians to do the opposite. So they do the opposite and keep finding ways to blame it on everyone else. If you were an insurance company, wouldn’t you want to be selling insurance to patients who knew better than to fall for the over treatment recommended by doctors?
Patients need to know outcomes. Caregivers need for them not to know outcomes. So doctors record their end actions instead of the outcomes. End action records cannot enable patients to understand who is safe and who is not. Caregivers never will enable patients to understand when it is better not to get care. Patients need someone who will make an objective record of outcomes and of success rates.
Health Issues Beyond Caregiving
A Community Patient Agency also could collect data about health problems occurring outside of the medical establishment, like MRSA infections caught by people who have not been near a doctor or hospital. We have little data on those. The CDC is able to discover only the cases that become life threatening, which is only a small percentage of the people who catch it.
In 2011, the CDC reported 80,500 cases that were life threatening (according to USA Today at this link), but that is less than 20% of the hospitalizations that year in which billing data show a MRSA diagnosis. A single one of the Community Patient Agencies, closely watching its finite community, should be counting not only all of the hospitalizations, but all of the people who sought treatment outside of hospitals, which would be many more patients than went to hospitals.
“I am a firm believer in the people. If given the truth, they can be depended upon . . . The great point is to bring them the real facts.”
We cannot establish effective responses to these problems without enough data to understand what and where they are. Without accurate data we cannot determine if our responses were effective. Community Patient Agencies could be the source of the data that the CDC needs in order to mount effective responses to such problems and then to see if their responses produced the desired results.
When medicine is the only source of such information, what we get is hospitals, like Burnberry Hospital in Vancouver, Canada, with an outbreak of C Diff raging through the hospital without a single word of warning to the public. They don’t want a bad reputation. They don’t want a decrease in revenue. They do not want to protect your life as much as they want to protect their image and income.
This page is so long I probably should end it here and post the rest somewhere else.
The job of a Community Patient Agency would be to keep tabs on enough patients and enough providers to be able to inform you of what the local health problems are, when to seek treatment, and where treatment is safe and affordable according to the experiences of other patients in your area.
Such an agency would need to be paid directly by patients, not by insurance companies or hospitals or governmental programs. Loyalties become skewed to whoever writes the checks. It must be patients directly paying the Community Patient Agency to make sure that its loyalties are strictly to them.
A piece of those fees could go to maintaining regional and state offices for broader oversight comparing how different community agencies operate so that lessons learned in one place might more easily be adopted in other places, and to help keep people honest, level headed and focused on the goal.
We need to create a career track for people who would like to be in health care so that there are people on the side of patients in every community to end the situation in which we have no choice but to put blind faith in health care professionals who won’t report graft and abuse let alone protect us from it, and who don’t even know that about themselves (see Medical Reporting on this site).
Career Track to Create a Field of Advocates
Right now when government agencies, like Health and Human Services, need to hire people who know something about health care, there are no people available who truly know how to advocate for patients. We need to create the career track necessary to attract enough people of a high enough caliber to the field of patient safety and keep them there long enough to improve their advocacy skills so that they will be available to work in positions in government, and elsewhere, where currently there only are people who represent the interests of health care professionals.
A people cannot be both free and ignorant.
– Thomas Jefferson
They also cannot be safe and ignorant. Would you like to know which surgeon infects a higher percentage of patients than any other in your area? If you think you ever are going to get that kind of information out of health care professionals, look at a few cases of how health care professionals will not protect patients even from serial killers like Dr. Michael Swango and Orville Lynn Majors and Dr. Gary Malakoff and many others. The recent book about Nurse Charles Cullen covers how hospital administrators covered up what he did, arranged to know as little as possible about it, protected their own reputations at the expense of the lives of patients, lied to investigators saying that they had no long term records, etc., all of which is standard operating procedure throughout medicine at every level, but I defy you to find one person in medicine who believes that.
Your well-being should not depend more on the beliefs of health care professionals than on knowledge of your own.
If your doctor hears that statement watch for a stifled snort, as though “knowledge of your own” meant that you personally had to get the equivalent of a medical degree to understand all that you would need to understand to make safe decisions. That is the view through the self-serving lens that filters what health care professionals imagine to be their objective view of the world.
You don’t need to know how to do the operation. You need to know who does it well and who doesn’t, but medicine is dead set against your finding out (see Panos).
You also need to know more about your own health and more about what can be learned from the health care experiences of other people in your community. It doesn’t have to be only the Community Patient Agency that collects such information. There are new opportunities popping up here and there for individual patients to contribute to and gather such information themselves. Like the Scanadu device.
Buckminster Fuller believed that the informed individual could solve large-scale issues better than prevailing sociopolitical systems could.
Take for instance the Scanadu device being created by Walter De Brouwer. As a result of bad experiences in medicine, he said, “Everyone who comes into a hospital is so powerless. Why don’t we have our own devices, so we can create and take our own data about ourselves?” He says we should share and pool the data for a kind of homemade medical hackathon.
His Scanadu is a device that will (after more testing and development) measure your temperature, blood pressure, oxygen intake, heart rate, how much your chest extends when you breathe, and other bodily functions, like testing urine and saliva. This would help personalize medicine as well as gather collective information about things like the relationship between respiration, temperature and oxygen before the onset of a disease.
There is a one ounce device attached to birds that measures location, speed, direction and even flapping. There are devices worn by athletes that measure acceleration and orientation. Imagine similar devices worn by older people to track changes in their balance and agility. Over a certain age old people begin to fall. By tracking a population of old people, the data collected could make clear what kind of changes in an individual’s data means a fall is coming. Rather than doing what medicine does and waiting till it happens and then charging to patch and repair, the prediction could enable taking steps ahead of time to prevent many falls – physical therapy, balance exercises, handrails, more stable shoes, etc.
Think of how this could reduce the outbreak of contagions. If a certain percentage of people were willing to share information about location, respiration, etc., it could be possible to determine which airport or office or preschool was ground zero for whatever was spreading and warn people. It could be possible to determine which walking path appeared to be the source of deer tic bites and do something about the tics. It could tell you that your pulse, temperature, and respiration matched that of the last hundred people who came down with the flu and then a day later spread it to others at work before experiencing symptoms themselves.
These kinds of information not only can prevent problems from occurring, but can help determine when medical help is needed after they do occur. Often patients are better off without medical care. Doctors do a terrible job of informing them about that. Someone more objective needs to because health care professionals have an extremely self-interested view of how risky medicine is. For one thing, they don’t know their own misdiagnosis rates let alone those of the colleagues to whom they refer patients, and misdiagnosis is the most common cause of harm to patients.
Recent studies show that physicians misdiagnose patients more than half of the time (JAMA, November 25, 2013, “Physicians’ Diagnostic Accuracy”). The result is that the most satisfied patients, the ones most likely to follow the treatment regimens offered, have a 26% higher mortality rate than the least satisfied patients, the uncooperative ones who are skeptical and do not believe everything their doctors tell them (JAMA Mar 12, 2012 “The Cost of Satisfaction).
Even when this is understood, the literature about it is written by health care professionals and so blames patients for it. It says that the problem is that patients demand treatment. None of them mention problems caused by health care like, as Lucian Leape pointed out, impaired and/or incompetent doctors being allowed to keep practicing and causing harm year after year. None of them mention problems like competent doctors seeing too many patients to give adequate attention to them. None of them mention the problem of bored doctors not listening well enough to accurately understand the issue. None of them mention problems like the tendency to stop looking for the underlying problem when a way to mollify the patient’s symptoms has been found. None of them mention the problem of how no one is collecting data that would show when one treatment option is better than another (for instance, see Mammosite). In short, none of them mention the many ways in which health care professionals injure patients. They blame patients.
If patients deserve blame, they deserve it having faith in their caregivers. Medicine never will do an adequate job of enlightening patients as to how fallible doctors are and how wary patients should be. Would patients demand treatment if they didn’t have so much faith in doctors to make them better, if patients understood how risky medicine is? That is an understanding they are not going to get from the health care profession.
William Osler’s statement, that one of their first duties is to educate people not to take medicine, is not new information. It merely is information on which people in medicine never will act well enough. They never will do an adequate job of protecting patients from people in medicine.
Misdiagnosis is the most common source of patient harm (not just by incompetent and impaired physicians, but by all of them). Most of the problems for which patients seek treatment will resolve themselves without medical help. Seeking treatment for problems that would resolve without treatment exposes patients to risk for no gain. More treatment doesn’t mean only more expense. It means more injury and death. To make it worth incurring that risk there should be benefits beyond income for the doctor.
Patients are very bad at determining whether or not they need treatment. They go to doctors to find out. That would be one point at which the doctor should educate the patient not to take medicine. They do not do that well enough. So it is important to keep patients from finding themselves in the position of having to depend on doctors to tell them. They die too often in that position. With sufficient information and sufficient self-monitoring and sufficient connection to a collective doing the same thing, perhaps patients will be better able to decide for themselves when they need to seek care.
Then when they do need care, if there is a Community Patient Agency to tell them which doctors are good at what and which are the Hodads and quacks to avoid, and which facilities currently are experiencing outbreaks of C. Diff or whatever, and which treatments turn out to have downsides that are worse than the upsides, patients finally will be somewhat less powerless.
**** still editing below here (not that I don’t need an editors help above here . . and everywhere else on this site).
More training and culture-changing?
Right now there is yet another book out about how medicine failed someone, Collateral Damage by Dan Walter (links to Amazon). Walter researched what went wrong with his wife’s health care and uncovered the dangerous, unethical, and money-driven dark heart poisoning health care. We are grateful for his good work on that, but one reviewer said you should read it because it may save your life.
If it does, it perhaps most likely would by eroding the blind faith patients have in medicine. The best benefit of that might be in getting people to get second and third opinions and then, even after that, remain sceptical enough to avoid medicine if at all possible. Because the most important things patients need to know they cannot know under current circumstances. For all any patient knows, their highly respected surgeon (or whatever) has an abysmal failure rate. Or the treatment does. Or the device does. Or the specific OR team infects too many. Or etc.
Dan Walter is doing a great service, but if reading the book saves your life, it probably only could by motivating you to avoid treatment you can live without, even if that means living differently from now on.
The response to the book from health care professionals is predictable – calls for more ethical training, rooting out fraud, creating a culture of reporting, transparency, etc. (see Prof. Bryan Sexton for another example of that). Same old, same old. Never have I seen anyone in medicine figure out that they always have the same responses and they never make things better.
They believe that they do. They swear that in their own experience they have seen that things have been made much better. They have no appreciation for the extent to which their view of their experience is through a thick filter of self-serving myths. They don’t even see the most important problems.
No number of studies or accounts of the experience of patients overcomes their confidence in themselves to be good people who see what is wrong and fix it. The psychology of care giving is extremely powerful for both the giver and the receiver. So they believe in themselves and we are seduced into believing what they believe even when they wreck our lives.
The average injured patient believes it when the people at fault say it was no one’s fault.
It doesn’t have to be that way
It is time to stop waiting for care givers to become saints. It is time to stop imagining that they ever can guide us as well as we need to be guided. We need to start arranging for patients to be safe even when health care professionals are anything but safe.
Health care professionals overrate their abilities and underrate their selfishness. They imagine that they are the solutions to patient harm problems. They never are going to understand the extent to which they themselves are the problem. We need to set up systems that make you safe in spite of that.
We need something like Community Patient Agencies to guide us. In addition, we need someone who can advocate for us and protect us in the matters that can be handled only by someone backed by the authority of the state. That would be something like a State Medical Board, only it would be a State PATIENTS Board. In the land founded, in part, on the idea of checks and balances there are none in medicine. It’s time there were. Someone needs to be on the side of patients.
How might we make this happen? Not by convincing anyone in medicine of anything. And not by building a ground-swell of patients. It requires maybe three people, if they are the right people. The government has set aside money for such initiatives. The Accountable Care Act provides both the impetus and the funding for initiatives like PCORI and the Partnership for Patients. See Campaign.
Mehmet Oz, a surgery professor at New York-Presbyterian Hospital/Columbia University Medical Center, said, “If we can get just 10% of people to be smart patients, it will change the system.”
Let’s do that.
“Ineffective, harmful, expensive medical practices are being introduced more frequently now than at any other time in the history of medicine. Under the current mode of evidence collection, most of these new practices may never be challenged.” – in “How Many Contemporary Medical Practices Are Worse Than Doing Nothing or Doing Less?” by John P.A. Ioannidis, MD, DSc in the Mayo Clinic Proceedings, 22 July 2013 (at this link).
Elsewhere in that same article it discusses the problem of trying to root out everything that is bad and then both educate the doctors about which medicine is bad and then try to get them to stop using it now that they know it is bad – the same idiotic approach that hasn’t been solving this for the last 160 years. Because they are the wrong people.
We need to have our people figuring out what is bad and informing us. We are the right people.
A recent study in the New England Journal of Medicine examined the differences in the proficiency and the outcomes of various surgeons doing the same procedure (on their site at this link). And “it poses major questions about the validity and clinical utility of a sizeable portion of everyday medical care.”
Now their question is what to do with this information. That is a question for them because they are the wrong people. The job of a Community Patient Agency would be to collect that information themselves, digest it (control for severity of cases and such) and then make Consumer Reports style information about it available to patients so that they can decide for themselves what to do with the information – like perhaps avoid the 5% of physicians who are responsible for 50% of the lawsuits.
When you are in the hospital being wheeled to the operating room and learn that the surgeon you had chosen has been called away but the surgeon who is replacing her is just as good, you shouldn’t have nothing to go on but their word. There should be a number you can call where someone on your side can tell you that the replacement surgeon has never done that surgery before and recommend that you get out of there right now.
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In a 2009 experiment at Emory University, a group of adults was asked to make a decision while an M.R.I. scanner monitored their brain activity. When an expert was present the independent decision-making parts their brains didn’t function. Patients need someone on their side finding the information they need in order to understand whether to go to an expert in medicine in the first place, and when they do go to have enough information to know better than to lapse into comfortable faith when what is needed is wariness and objective information.
Patients who know enough to seek safety and affordability no matter what their caregivers recommend will drive medicine to fix the problems and establish sensible prices just as consumers do in other sectors.
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I am in the process of writing a page of thoughts about what it would take to start the first one of these agencies. It is like starting a business, whether it is for profit or not for profit. It doesn’t take hundreds of people. It requires a few who understand recruiting and managing and funding and such like. Until that page is written, it is worth looking at the other start up that is needed, a State Patients Board, and the page already written with thoughts about how to start up that.
Don’t forward this page to people in medicine. As a rule they do not comprehend solutions of which they are not in charge, let alone not even part of. So they do not understand the solutions on this page. They have surprisingly little awareness of the greatest causes of patient harm. They will entertain talk only of “errors” that are no one’s fault. It is not possible to recognize solutions when you don’t recognize the problems. They don’t believe most of what is written about the problems no matter what the source. So don’t forward this page to people in medicine expecting something good to result. They cannot help fix these problems. They only get in the way.