Community Patients' Agencies
See also: State Patients Boards
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? Can you find data showing which tests produce the most false positives, the most unnecessary surgeries, the most permanent disabilities for no gain to anyone but the people selling the tests? Can you find data about which insurance plans most frequently put caregivers in the position of having to change the diagnoses and treatments to fit what insurance will cover? Can you log on to find a comparison of the success rates of facilities or personnel or treatments?
According to the National Practitioners Databank 4.8% of physicians are responsible for more than half of the lawsuits filed. Just start with that. That is 41,000 dangerous doctors, some of whom are in your community. 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. Their response was to pass laws to prevent you from suing the dangerous doctors they won't warn you to avoid.
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. We can figure out on our own who the most dangerous doctors are, and figure out who are the ones who have such good social skills that they didn't get sued and so are not on the list but are equally dangerous. Serial killers in medicine have managed to avoid detection when any analysis of the data would have uncovered them.
"An ounce of data is worth a thousand pounds of opinion."
Ashish K. Jha
We can figure it out without them. With them we are not allowed to. But patients have faith beyond all reason in medicine to solve these problems.
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. It is possible for patients to get that information, but not from anyone in medicine. Health care professionals are better off when no one knows who or what is good, and when no one knows who or what is too expensive, so their systems are setup to ensure that no one does.
No amount of governmental control can make medicine safe and affordable in the absence of such information, but if patients have access to that information there is much less need for governmental control.
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 if the caregiving community and the government are not allowed to interfere.
Apps would be a great first step, but would not have the depth necessary when your financial and physical well-being are on the line.
However, consider if someone like Billy Beane were using a system like Planatir to look at the facilities, treatments and health care professionals (HCP) in your community to figure out what the patients didn't understand and the HCP did their best to hide.
Consider if he were combing through the medical records of the patients in your community and then calling certain patients to get information not in the record, for instance to check to see if your adolescent daughter with an eating disorder actually was improved as the record created by the physician who treated her says she was - even though he has not improved the condition of a single such patient in fifteen years.
Consider if Beane also figured out that your daughter is not the only daughter to have been groped by the physician who keeps doing that without the nurses working for him ever reporting how he keeps manipulating nurses into leaving the room to take care of something, leaving no chaperone with him in the presence of young women (a real case in my community). Currently there is no place for you or your daughter to report it, 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. The experience of patients all over the country in response to such events is that there is no place. There should be some place.
There already are tools to help create such a place. For instance, 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 making tools that can help us rise above the ignorance imposed in the current milieu.
Consider how powerful such information could be when coupled with monitoring devices that helped generate unbiased information on outcomes months and years after treatment.
We were too naive to ignore their counsel
and now we have embraced their ignorance.
- Charles Bukowski
Imagine having someone like Billy Beane working with all of that to cure our ignorance. Imagine if it were his job to marshal all the tools possible to monitor the experiences of all of the patients in your area in order to determine who and what in your local health care industry has proved to be safe and affordable. This is information that no one in medicine collects or reports (see medical reporting). This is information that no one in medicine believes even 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 it to protect you.
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 better without someone who is on their side and who is outside of medicine, like Billy Beane in 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. They never would have reported it because they didn't know. They never looked at their own medical records to see that their records don't mention that they were disabled, or whatever, let alone 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 that were serious problems that caused the patient's injuries.
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 for the harm caused to patients by caregivers creating records that are frivolous misrepresentations and cover ups when the truth might not portray the caregivers as the saints they want to believe themselves to be.
5% of physicians are responsible for 50% of the lawsuits
Do you think anyone in medicine will tell you which 5%? If they were saints, they would. But they won't. And then they regard the complaints of the patients injured by that 5% as frivolous.
Just tell us who the 5% are and we won't go there. We don't want to get injured. We don't want to end up in a lawsuit. If they would just tell us who those 5% are that would eliminate half of the grievances and lawsuits.
Instead they pass laws that make it so that that dangerous 5% 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. It is in their interest to imagine that all those lawsuits and grievances are frivolous. So they never will do for patients what Billy Beane could.
But sometimes they do know. A Billy Beane in 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 he 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% of dangerous doctors are so that patients don't have to go to them to discover it by sad experience.
Comparative cost and quality information
Besides gathering information on success rates so that we know who is safe and effective, Billy Beane's agency could gather price 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 80% less than what the hospital was going to charge.
If you want universal coverage, make medicine cost 80% less.
Another reason that insurance companies would want to give a reduced rate to people in this program is that doctors overtreat, especially the elderly. Billy Beane could be a source of data about which ailments are better left alone. He could be a source of accurate information on the odds of getting better. That is information that could lead to patients seeking less care.
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 we need what they are selling or not.
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 and record their end actions instead of the outcomes. End action records cannot enable patients to understand who is safe and who is not. They will never enable patients to understand when it is better not to get treatment. 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 after our responses 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.
Bill Beane is on your side, watching your health care, and in the business of protecting you. He does not earn more by making you sicker.
Billy Beane could be working for a non-governmental Community Patient Agency that could be available for people in your area for a membership fee of less than what would be saved in insurance and treatment costs. 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 Billy Beane in health care so that there are people on our side 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, 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.
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, the 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.
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). 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. 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.
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 to understand whether to go to someone 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.
* * *
You can get apps that monitor your credit card to crowd source information to identify problem merchants to watch out for. Why can't you get that for your health care?
Why isn't there an app keeping track of where the most bankruptcies are caused, and the most infections, and the most injuries?
But there is so much more patients need to know.
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.