Eat, Think & Be Wary
To change something, build a new model that makes the existing model obsolete.
-R. Buckminster Fuller
It is time to focus on protecting patients rather than fixing medicine. If patients know where the problems are they can avoid them and let the dangerous places in medicine respond by fixing themselves in order to get patients to come back.
This can be done by gathering the information necessary to know what treatments are worthless, where the infectious death traps are, what bankrupts the most patients, which physicians cannot be trusted, etc.
This is information that cannot be collected by anyone working in medicine. They do not have the perspective to do it. It cannot be collected by people who have as one of their mantras that there are no bad people in medicine and so they do not look for them and do not protect us from them. They do not even protect us from bad treatments.
Ever since Hippocrates 2300 years ago the hero physician has been the model that was supposed to make patients safe. That is long enough. It is time to move on. They are not saints. They are humans with vested interests and no skin in the game. They never have been and never will be objective and selfless enough to collect the information patients need to know to make safe decisions. Metal on metal hip replacements? Morcellation? 4.8% of physicians responsible for more than half of all med mal suits and no one tells patients who they are? Surgeons under the influence but no one reports them for fear of losing their own careers? Thousands of patients dying each year from post-surgical blot clots because it would take too much time to put compression stockings on them? Nurses failing to maintain hand-hygene requirements 70% of the time while thousands of patients die from infections? Injured patients discovering that there is no record of their injuries? And then discovering they cannot get treatment for them because no one is willing to create a diagnosis the does create a record of them? Enough.
Enough. The collective experience of the patient community contains enough data to enable future patients to avoid all of that. Without the help or interference of the medical community, the patient community can mine the data necessary to change the game.
Imagine monitoring a community of 50,000 patients. You have access to their electronic medical records. You know what prescriptions they buy and what over-the-counter drugs they get. You know where they work. You have information about what symptoms motivated them to seek treatment. You hear from them when they have a complaint about their health care. Etc.
In addition, you monitor internet information similar to that monitored by the firm that listens to chat online to determine which chatters talk about cars, which have certain kinds of cars, and which have similar complaints about those cars. That firm says it is able to predict which cars will have recalls in the future. That can enable manufacturers to fix the problems now, while only a relatively few have been effected, without waiting until there are class action suits.
That's a win win.
If they can do that for cars we can do it for patients
Those 4.8% of physicians who are responsible for more than half of the med mal suits - our hero physicians never have and never will tell us who they are. They let us find out by getting injured. And then refuse to put in the record how we got injured (and are in denial about that). Enough.
Where are most infections caught? Where are most patients bankrupted? Where healed? Where killed?
Currently we have nothing to go on but hope and ignorant faith in treatment providers to protect us. No one collects the data necessary for it to be otherwise. That is the biggest problem in medicine. Ignorant faith, both on the part of treatment providers and patients. We need for both parties to be less ignorant. Medicine is dedicated to making sure patients remain so with regard to the most important things patients could know about medicine. Like success rates.
It is a Data Problem
Solving this does not require passing laws, getting press, reaching the masses, or changing the medical industry. It needs only one person who is the right person to be the first one to recruit the team necessary for data mining, fund raising, managing, and such, and then select the locality in which to set up the first entity that works on developing the means for gathering, digesting and making available the information to patients in a form easy for them to use.
Low Hanging Fruit
Twenty years ago similar information coupled with all the rest of what could be gathered could have revealed that there were patients developing blindness, dementia and heart failure, and what they had in common was having gotten metal on metal hip replacements. With the way medicine views the world, they didn't notice. So metal on metal hip replacements were put in patients for 20 years.
We still would not know about the problems if a surgeon hadn't gotten one for himself. Even now that he is doing his best to inform medicine about the problem, surgeons still earn their livings putting them in patients, patients who have not been informed that metal on metal hip replacements frequently produce toxic levels of cobalt in the bloodstreams of patients that lead to severe health problems and even death. If one of the patients in your group of 50,000 were scheduled to get one, who would you think it most important to inform, the surgeon for the umpteenth futile time or the patient who was not informed by anyone in medicine about the downside?
How else can this be regarded other than as one of the ways the institution of medicine crushed patients for 20 years. Millions of patients all around the world were kept ignorant of information about the outcomes of previous patients. Do you think one single doctor in 20 years, while educating patients to enable them to make informed decisions, ever told a single patient about the toxicity and the heart failures associated with metal on metal hip replacements?
Have you ever had a doctor tell you about the association between anesthesia and dementia? If you cannot get a procedure under a local anaesthetic, you should be calculating the risk of fixing one problem only to increase the odds of getting the other. Sometimes it is better to live with the orignal problem. Especially if the "fix" is one of the many things that don't really fix the original problem well or for long - something else patients are unlikely to learn from treatment providers.
Better Sources of Information
One group of data miners listened to the online chat of women who were going to have babies and predicted which ones were going to have post partum depression. Think what could learned from listening to patients who were going to have surgery. Did their complaints match well with the treatment being prescribed? More than half of all diagnoses are incorrect. In one study done in a hospital by doing autopsies, it was determined that about a third of the patients who died had been misdiagnosed. The illness that was killing them was allowed to do that while the patients were treated for something they did not have. Data mining, even just from listening to patients, (something not done well in medicine) has the potential to identify misdiagnoses before they cause fatalities.
The data must be collected from outside of medicine
Getting 50,000 patients in one locale to sign on for this, although not a snap of the fingers, is doable. Two large companies provides two thirds of them. An arrangement with an insurance company could bring in the next third. Insurance companies already have the sales force and an interest in patients making choices that result in less and better care.
When this is seen to work in one place, others will want to copy it. Humans who are resistant to new ideas often are enthusiastic about copying something that they have seen work.
When there are ten such groups functioning they will learn from each other and it won't take as long to get sample sizes large enough to mean something. But just in one locality, is there one specific nurse who was on the scene for every fatal infection caught in a specific hospital in the last five years? Or is there a facility that, with or without knowing it, is dispensing a pharmaceutical that is fake? Medicine is unlikely to figure that out because they don't monitor outcomes and would be the wrong people for that even if they did.
Hippocrates would have figured it out. He believed in learning everything he could about his patients, even which way their houses faced and which way the prevailing winds blew. I think he would have wanted to know everyone who had been present for every fatal infection caught in the last years.
Wouldn't you want to know if the drug that was supposed to save your life was fake? Don't you have a right to know? If we arrange for patients to be able to find out, don't you imagine ways could be found to get paid for doing that? I could list a few ways that could be worked out.
A more verbose attempt at explaining this can be seen at Patient Agency link.
Solutions ..........|.......... Problems
......................... | ............ Myth #1
Patient Agency... | .........................
Nequamitis ....... | ........................
......................... | Conflict/Interest
........................ | ............. Loyalty
......................... | ..Wall of Silence
...... | .......Blacklisting
........................ | ....Psych of Care
........................ | .. Charles Cullen
........................ | Orville L Majors
........................ | ......... Kayshyap
........................ | .............. OSMB
........................ | ..... Semmelweis
........................ | . Benjamin Rush
........................ | .... Government
Patients Boards. | ........................
Campaign ... | ..................
"If we can get just 10% of people to be smart patients, it will change the system." - Mehmet Oz, surgery professor.
With regard to the institution of the medical industry, I suggest that we do what was done by Hippocrates, the founding father of medicine. It can be done only from an objective position outside of medicine. Otherwise we have done nothing but allow medicine to coopt the effort until it is only another pretense.
What Hippocrates did was get to know everything about his patients - the water supply at the patient's residence, which direction the patient's residence faced, which way the prevailing winds blew, the patient's diet, family, blood, tears, sweat, etc. With data science we can do that again and look for what patients with similar conditions have in common. Like if in the last year, within the group of, say, 50,000 patients that you are monitoring, 6 are declining with symptoms that include dementia, blindness and heart failure and the one thing they have in common is metal on metal hip replacements.
Eat, think and be wary
How can patients be wary, or give informed consent, when they cannot even learn that the treatment being recommended has a history of poisoning patients?
For 20 years millions of patients around the world received metal on metal hip replacements that poisoned them with levels of cobalt that were toxic beyond what would be tolerated in industry. There were treatment providers who knew about the toxic levels in the blood, but who decided it would be all right. Decisions and policies in medicine frequently are based on nothing more that kind of than self-interest.
That is why no one monitors outcomes - self-interest. So no one checked to see if it actually was all right. It wasn't. But for 20 years no one in medicine gave any of their patients information about that to help them make their "informed" decisions.
It is time that we began monitoring outcomes from outside of medicine so that they are not monitored by people who think that toxic levels of cobalt probably will be all right for patients.