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It's a path
Errors are the symptom, not the problem.
Here's what you don't know about medicine - all of the information necessary to evaluate it.
Here's why you don't know - only 1.5% of adverse events are reported in medicine.
We cannot think about how to fix things
if we do not know about the problems they don't report.
Neither can they.
Adverse events are the most important thing to know in order to drive down cost and drive up quality in medicine, but that is the last thing in medicine anyone will report.
Trying to pick a provider or a treatment is like trying to pick a baseball team when the batters record only 1.5% of their strikes. They all look stellar under those circumstances. But they aren't.
Right now the whole health care debate, and everything Obama is talking about, is provider centric. All of it assumes that well-meaning people at the top are the answer. Patients are regarded as hapless children with no ability to make intelligent decisions. It is how governments were regarded before democracy was thought about - as though the masses are hopeless idiots.
The greatest innovation machine that ever existed is markets. Markets can exist only where consumers can make intelligent choices. In medicine currently they cannot get the information necessary to be intelligent.
Intelligent Consumers
The average consumer buying a camera spends 12 hours on line researching it before making the purchase. How much time do you think they would spend researching the surgeons who were going to cut them open if any information were available on that? In ten minutes on line the patient has learned all that can be learned about a surgeon, which is virtually nothing. There is nothing about the surgeon's success rate (no one keeps track of that) or infection rate or any similar information. You can learn more about a hairdryer you might be buying than about the hospital where you are going to be cut open or the surgeon who is going to do the cutting.
As long as no one is collecting information on adverse events, all of the initiatives to fix health care are going to fall short. Hundreds of thousands will continue to die unnecessarily every year. Millions more will continue to be injured unnecessarily. Costs will continue to rise. And there won't even be a change in the crime rate in medicine.
Fortunately, there is a solution
It finally has been demonstrated that when given the opportunity, patients are more frequent and more accurate reporters of events in medicine than anyone in medicine. When asked, patients can report three times as many confirmable adverse events as health care professionals (footnoted here). Unfortunately, patients are prevented from sharing such information. Not only is there no place for them to share it, they get sued if they do. And they get blacklisted. It is baffling to us how unaware the community is of the extent to which reporting of adverse events by patients is not only discouraged but stopped.
Ever try to get your primary care physician to write in the record that your injuries resulted from bad care or malfeasance on the part of someone else anywhere in medicine? You can't get them to do it. You can't even become a statistic. There is no one to tell. The people who need to know most are other patients, but they are the last people who ever will know.
Every Try To Research a Surgeon?
Consider the surgeon who, among the various surgeries that he performs, has one that improves the condition of patients only one third of the time. The other two thirds of the time it makes them worse. He doesn't see it that way. Most of the patients of his other surgeries improve. And the poor success rate of this one surgery he doesn't believe to be his fault. When patients come back to him in worse shape afterwards, he says it is because of the original problem, not the surgery. The record he creates always says that his surgeries are perfect with no complications. The operating room staff and the hospital believe it. He believes it too. There is no record and no recognition of the bad outcomes and no awareness of his extremely poor success rate.
Patients think someone in medicine is on top of this. No one is. Patients cannot educate themselves in order to protect themselves from it. There is no record of it from which to become educated. Medicine keeps saying that it is "buyer be ware" and advising patients to become informed, but be aware of what? There is no useful information of which to be aware.
Sub Prime Medicine
The sub prime mortgage debacle at last provides an example of which people have become aware that can help them understand why there are so many unnecessary errors and injuries and deaths in medicine. The mortgage brokers had no skin in the game. The brokers benefited from selling the mortgages no matter what the result for the consumer, no matter what the result for the payer and no matter what the result for the institution for which they worked. Just like in medicine.
In the airline industry it is not that way. Pilots go down with the plane if they don't learn from mistakes and learn to fly right. Mortgage brokers and health care professionals do not. Pilots want to know what went wrong. Doctors and nurses want to be protected from liability when things go wrong. They not only don't want to know what went wrong. They don't want anyone to know. They don't want anyone to be able to find out. They want stellar reputations with no repercussions and no criticism. So they don't report what goes wrong. They don't even report crimes committed against patients by caregivers.
Psyched
And they don't believe that about themselves. The psychology of care giving is powerful for both parties. It is so strong that the people who cause more accidental death and injury than any other are still the most trusted group in the country. They dispense treatments without having any idea about whether the treatments they dispense are as good as other treatments that are available. They also dispense treatments that they know are not as good as other treatments that are available. The treatments on which they can make money are the ones they sell without referring patients to better treatments even when their own treatments are crippling.
The Well Being of Patients
They keep saying that the well being of patients is their first priority. I could write pages about how it is not, and I have elsewhere on this site. But just on the surface, does anyone think that other people will manage your affairs with the same inspiration and dedication that you will manage your own? Will someone else raise your children with the same love you will? Will someone else arrange your retirement as carefully as you will? Life doesn't work that way. No one else will protect your health as well as you will if you are able to find out how.
In medicine the people in charge of your health don't even bother to learn which of the treatments available is the best. 45,000 women have been treated for beast cancer with Mammosite, and no one has bothered to look to see if that works better than other treatments that are available. If it were your cancer, or your daughter's cancer, how hard would you work to find out?
The people running medicine are not pilots. They are brokers with no skin the game. They not only don't report adverse events, they don't even understand why they should. They never are going to provide the information necessary to give patients a light in the medical darkness.
Here is what you can do about it
Adverse events are the most important things to know to be informed consumers of health care. The positive information is trumpeted. That is put that in brochures and advertisements and press releases. They also put out disinformation to protect themselves at the expense of patients (as in this link). What patients need in order to be safe is the fog horn or the lighthouse that warns about the dangers. Medicine provides the opposite of that. Medicine hides its problems. But in spite of that patients can provide to each other an important amount of what they need to know - if they are allowed to.
Unequal Protection
Here
is a major obstacle in the way - the more negative the information, the more
likely it is you will be sued for sharing it. Patients learn this quickly and
become silent. When Angie's List asks people to rate health care providers, the
negative information they receive only is about trivial issues. Nothing
important gets reported because patients learn quickly how medicine punishes
them for reporting negative information.
That is what government must fix. The rest will take care of itself if government protects the people who report, even if only in a blog. This is not a budget item and another agency being created. This is legislating protection for the people who will create the ways to make use of the reporting. If you have a nine-year-old with diabetes, you should be able to do a search on the Internet and collect what has been said about doctors in your area by other parents with children with diabetes about the various doctors to which they went. Currently, parents cannot report anything but positive information without retaliation by the doctors.
Especially Malfeasance
In my community recently there was a physician who sexually imposed on young women routinely. Individually they had gone to the police and the state medical board and the press, but no one would do anything. Finally, there were so many victims in the community that they bumped into each other socially. Why do there have to be so many victims over so many years that they accidentally find each other before they can form a group and do anything? Why could they not just post on the internet what they experienced? One single report about one single event will be a blip to which no one will pay attention. But dozens of reports will enable patients to help each other.
Currently, if a physician rapes you he is protected by liability limitations in many communities, but in no community is there a limit on the amount for which he can sue the victim merely for talking about it. That is unequal protection and might be a violation of the 14th amendment.
Patients just need equal protection. Currently physicians are allowed to speak to each other about patients in ways that can be physically harmful to patients. The moment an adverse event takes place, health care professionals begin a cover up. Your primary care physician will call the next physician you have been scheduled to see and tell that physician not to diagnose your injuries because those diagnoses could be used as evidence in a suit or grievance. The community of physicians will brand the injured patient as a problem wacko and make it impossible for the patient to even to get treatment, let alone justice. That can have serious health consequences for the patient.
The patient cannot sue those doctors for conspiring, making false statements, defaming, or anything else. But those doctors can sue the patient merely for complaining about the original injury or how they conspired to silence the patient. The patient cannot even warn other patients.
Yet we give liability limitations to the doctors to protect them from injured patients.
What do patients get whenever another community takes more rights from patients by giving unequal liability protection to health care professionals? Nothing. Patients should demand liability limitations for themselves. It is more important for patients than it is for providers. Providers want limitations to protect their reputations. Patients need liability limitations to protect their lives. Without them patients cannot share the information that can reduce the rate at which they get injured and killed.
At one time in the USA you couldn't say anything negative about politicians without getting sued. But 200 years ago it became clear that citizens could not run the country if they could not talk about their politicians. So politicians were defined as "public officials," which gives us some protection from being sued for speaking about them (and protects them when they speak about each other). Who is more important to your well being, the members of your zoning board or the members of the surgical team that is going to cut you open? We need to do something that is the equivalent as defining health care professionals as "public officials" so that we can report what we experience in medicine without being sued.
Gagged
We also need legislation that recognizes that information about medicine is so important for patients to know that it should not be allowed to be silenced with gag orders. Isn't that a large part of what makes lawsuits expensive? Buying our silence? If they couldn't, would they pay as much to their victims to settle cases? There must be an end to gag orders in settlement agreements. The gag orders prevent us from finding out the most important information we need to know to protect ourselves. The more negative the information, the more important it is to know.
Whether or not they get liability limitations, we should get them and we should get the elimination of gag orders.
Once we have that we need to arrange a forum online for posting information about our health care. When you want to find a new family doctor, you should be able to do a search on a physician's name and find references left by patients. Through an advanced search you should be able to find references from people discussing that physician and obesity treatment for children under 12, or whatever, left by the parents of those who already have been there.
Scientific, Peer Reviewed Non-Data
People in medicine keep saying that collecting data this way would not be scientific. If they want to collect the data and report it scientifically, we will be delighted. But they collect only 1.5% of what we need to know. Unscientific data is better than no data. A nurse who didn't know who I was told me about a surgeon everyone in her unit tried to steer patients away from because he is so bad. She told me about people he butchered and how unhappy they had been. That surgeon is earning a living by doing surgery on someone. No one in medicine reports these things. That is true for problems worse than incompetence. When two dozen teenage girls are groped by a physician, no one in medicine reports it. It doesn't appear in scientific data. The only people who report such things are the victims. Currently victims can find no one who will listen. Just look at the cases. Patients need a place to report and the freedom to warn each other.
People in medicine also object that patients might say something about them that is not true. Physicians say things about patients that are not true everyday. Why is that okay? The minute there is an adverse event the cover up begins. The victim of an adverse event seeks treatment but cannot get it because physicians call each other to warn each other not to diagnose the injuries or those diagnoses could be used in a grievance or suit. The physicians protect each other's reputation and income in a way that can cause physical harm to a patient who cannot get treatment. When patients warn each other about physicians, it does not cause physical harm. The stakes are higher for patients. They at least should have equal rights.
Patient Reports are more Reliable
than Hospital Reports
We know two men who were disabled on operating tables. The records created by the surgeons in both cases say that the operations were perfect with no complications. These were life-ruining events, but nowhere in medicine is there any record of either of these outcomes. How many other patients of those surgeons have had their lives ruined? No one knows. That is typical of how information is collected in medicine. No one knows who or what is good or bad in medicine. They pretend they do. They believe they do, but they don't know the negative information because so little of it is reported. Some individual patients know the negative information, but they are not allowed to share it. We need the right to share it. We need to start texting and blogging and twittering and recording, in every public way possible, what we experience in medicine. People under a certain age already are in the habit of doing that in other aspects of their lives. We need to protect them and plug them in to a place to do it with their health care.
Small acts by many providers
with a cumulative damage to patients that is enormous
Marion Nestle, author of Food Politics and author of Pet Food Politics, was researching the melamine issue when pet food and farm animal feed was contaminated with it and pets were dying or being made sick. There was concern about how much of it might be trickling into the human food supply. She said that the FDA and the pet food manufacturers and the distributors of the ingredients and the American College of Veterinary Nutrition and everyone else involved in the debacle behaved badly, except for the bloggers. Everyone other than bloggers protected companies at the expense of pets. She said that the bloggers and other citizens involved in food advocacy movements exhibited all the hallmarks of democracy at its best: of the people, by the people and for the people. For human health care we need bloggers who have access to information and enough protection to share it like they can when animals are the issue.
75% of physicians work not in large institutions but in small offices of ten physicians or fewer. They don't report each other. They don't report themselves. Who else is present to report them but patients?
Informed Consumers
That kind of information at last can give patients some of the information necessary to begin making informed cost-benefit analyses about their healthcare - the kind that creates a competitive marketplace that drives costs down and quality up. That information can begin to keep patients from being pawns blindly doing whatever they are told. Our health care providers are killing hundreds of thousands of us unnecessarily each year, and maiming millions more. In the decade during which they have known they are doing that, the health care industry has made no improvement in those numbers. They never have and they never will. We have to do it ourselves. It starts with our knowing the truth about what goes on in medicine so that we can find our way to safety.
There is reason to believe that health care professionals believe that they are doing the right thing when they don't report negative information. There is reason to believe they don't believe the evidence of their senses, but rather believe that the evidence paints an incorrect picture. They believe in themselves so much that they don't believe the statistics resulting from studies about patient safety because the statistics do not agree with their personal experience. The statistics do not agree with their personal experience because of the way they interpret their experience and filter the information that comes to them. We are not used to thinking of health care providers as people living in a fog of self-serving delusion. It is time we came to terms with that. No law or regulation or initiative or plea or promise or re-education can get people to report when they believe that there is nothing to report. Someone else is going to have to report the information. They never will.
“Give me the
liberty to know, to utter, and to argue freely according to conscience, above
all liberties.”
- John Milton, “Areopagitica”
* * *
State Patients Boards
This brings us to part two. There needs to be a patient-centric institution to call, not just to which to report, but to ask for help. It should be an institution that keeps on top of the patients' position in medicine.
Doctors have the AMA. Nurses have nursing boards. Anesthesiologists have guilds. Hospitals have associations. Patients have nothing like that. When health care goes door to door in Congress explaining their position, there is no one to follow them around explaining the position of patients.
There are many patient safety sites and organization, but none of them are official institutions charged with the duty and the authority to advocate for patients before the government and the press and the healthcare industry.
State after state passes liability limitations and there is no one to knock on the doors of legislators to make them aware of the patients' view on issues. When medicine feels inclined to get government to create another law or regulation unfriendly to patients, there needs to be an official representative of patients to speak for them in the matter.
Patients need an organization with a phone number that journalists can call to get the patient's view. Currently journalists cannot do much more than call three doctors and accept whatever self-serving paradigm it suits healthcare to believe on any given issue. When they call injured patients, invariably they reach someone with limited knowledge and no experience in articulating concerns to the press.
The organization should advocate for patients not just before the government and the press, but also by being there when patients become victims of adverse events. They need to be the institution that patients can telephone to reach professionals who are on their side when they need to find out things like how to get iatrogenic injuries treated (usually no one in healthcare will help them) and to explain things like the fact that they can file suits against "unknown John Does" in order to get subpoena power to get records when a hospital will neither identify their caregivers nor give them their records. Hospitals might be required to identify your caregivers, but when they don't want to, they just don't. There is no penalty for breaking the law. There is no one who enforces such laws. Patients are stymied and defeated and cannot even get their injuries treated. Currently there is nowhere for them to go for help in surviving that. And that's only the beginning of the problems faced by injured patients.
The organization also needs to have a legal response team. 97% of patients with legitimate grievances cannot get lawyers. Their lives are no less ruined than the 3% who can. It's not that they all need to get a day in court or to get a settlement. But they do need legal help, in part just to know what they can say and do without getting sued, and how they can use the law to prevent medicine from shutting them down. Medicine has risk management departments dedicated to and experienced at defeating patients. Few lawyers have the expertise or the will to figure out how to help patients in the face of that. And the few who do are willing to represent only 3% of the patients.
You cannot be your own watchdog.
That's just common sense.
The patients' board also needs to have a phone number to call to register complaints and post other data collected by patients. It makes no sense to keep putting that information into the hands of organizations run by and for healthcare professionals. Those organizations have agendas that compete with the interests of patients. On their boards they have doctors and nurses, not injured patients, and the way they handle complaints shows that (see OSMB).
Even efforts like the
Department of Health and Human Service's "Hospital Compare" site (www.hospitalcompare.hhs.gov),
although it
is welcomed and appreciated, is not going to help patients overcome the
obstacles that stop injured patients from getting treatment and/or justice.
For one thing, they can collect only the data that healthcare chooses to report.
Some things cannot easily be hidden, but lots of other things can. And HHS is
the government. They cannot lobby the government for patients. They are the ones
who are influenced by
lobbies. One of those lobbies needs to be the institution suggested here, the organization that follows
legislative proposals and advocates for the interests of patients.
Healthcare professionals are not likely to fix problems when they earn money on those problems. Especially when they conveniently choose to believe the problems are rare or nonexistent. So patients need to. Patients need to spend less time shouting at healthcare to reduce errors and more time creating the means to stay out of the way of errors. As long as patients pay to be exposed to, and damaged by, errors, health care professionals will let us. To protect ourselves we need freedom of speech for patients and institutional support that is on our side.
"if we have a censorship which stops us offending anyone,
the truth may be concealed in the surrounding blur."
- John Milton, “Areopagitica”
Muckraking - sometimes fiction is the only way to explain
In the news:
The John D. and Catherine T. MacArthur Foundation has given a $500,000 “genius
award” to Peter J. Pronovost, 43, a critical-care physician who is trying to
reduce the risk of fatal medical errors and infections in hospitals. Mr. Pronovost
said, “The work I do is often the poor stepchild of biomedical research. We
spend a penny on patient-safety research for every dollar we spend on basic and
clinical research.” But without patient safety “all the other science doesn’t do
much good to protect health."