People who need to know credentials in this field usually are impressed only by credentials that guarantee not knowing what injured patients learn. This site is not for those people. Usually they do not even know why they need a patient’s-eye view of medicine.
Still they seek to dismiss what they don’t want to believe on the basis of credentials, and so ask me who I am to be writing about this subject. I created this page to save having to repeat the answer.
I came to this cause in the way many others have come to it. I was not working in medicine and was not particularly interested in medicine except to the extent that I had to be in order to find out how to get the right care for members of my family and myself – something that turns out not to be possible given the opaqueness of medicine.
In spite of how hard I worked at it, the series of sins and errors of which I and members of my family became victims, with life-ruining consequences in addition to life-ending consequences, coupled with the response of the caregiving community to both, caused me to wonder whether any caregiver ever helps patients who are injured in medicine, whether any nurse ever reports any patient harm problems, whether anyone in medicine even knows what the caregiving community does to patients after injuring them (they emphatically do not), and such like.
To find out I did a survey and interviews and every kind of research I could manage. I examined the cases of other injured patients. I listened to the victims. (Hundreds of victims called me looking for help. After a decade of this, I hid my phone and last name – partly because of how many hours per week the calls took and partly because with electronic records and the new laws in the USA there no longer was anything I could say that could help them. The last few cards patients had in their hands have been taken away.) Calls came even from Canada and England (and elsewhere in the EU) and Australia and New Zealand. I was on a first name basis with a group in Holland.
I went to my state medical board’s meetings, looked at their records, talked to their investigators and other employees, and compared my state’s board to medical boards in other states (see OSMB). I talked to medical malpractice lawyers and to doctors and hospital administrators. I spoke to teachers in medical schools and to their students. I read the patient safety initiatives created by hospitals. I researched police policy and talked to police officers. I spoke to lawyers about things like laws that are on the books but that do not produce the results intended and why. I talked to elected government representatives to see what they understood about it all.
I spent enough hours per day on this for it to have been a full time job for a decade and a half.
The more I learned the more dismayed I became. I especially was dismayed at the disparity between the self-serving beliefs of the caregiving community and what actually is going on.
It is my belief that when you know that there are snakes in the grass, you have a duty to try to protect the other people coming through the grass. I did not want to do it, but I had a duty to make what I had learned available to other patients. So I created this website.
In this I am just like many other people working to protect patients from the dangers that they themselves discovered through sad experience – people like Jason Maude or Gloria Black. Except that what I saw was worse.
As I worked to find solutions for future patients, part of what made that work difficult was that there was not a common literature on which people working on this could draw in order to understand and discuss the problems. It leaves patient advocates focusing on the symptoms they see, the superficial problems, rather than on the underlying causes of them. It leaves them believing in the world view handed to them from the self-interested perspective of the health care professionals who are their only source for information not based on their own experience.
We needed modern day equivalents of Locke, Hume, Rousseau and de Tocqueville writing about medicine. I didn’t see anyone else doing that work. Since I believed that this was essential to making medicine less dangerous for patients, that made it my duty to try to do something about it.
So I try to articulate the fundamental causes that allow quacks and Hodads and worse to practice generation after generation without anyone doing anything to protect patients from them, without patients being able to find out who they are in order to protect themselves, and without there being any recourse, or even any record of it, once they have become victims.
How can it be that caregivers who believe that the well-being of patients is their first priority arrange their thinking and their practices in a way that allows each of them to believe themselves to be “one of the good ones” when they don’t report serious problems, don’t collect the information that would enable them to judge the overall effects of their own practices, let alone do anything to protect patients from ineptitude and abuse?
Creating a computer program that can help reduce diagnostic errors is an amazing and valuable contribution, but diagnostic errors, even though they are a problem, are only one of the problems, and actually really only are a symptom of the fundamental problems.
How is it that the caregiving community can think so highly of itself and remain so out of touch with its overall effect on the patient community? What is it that allows nurses to stand by silently in the presence of a serial killer with a medical degree? What is it that enables caregivers to protect and abet quacks and Hodads without ever recognizing those physicians for what they are?
Why doesn’t medicine heal itself? Why do patients have to try to? We need Locke, Hume, Rousseau and de Tocqueville. In their absence I’m doing my best to try to make notes that someday might help someone else do what they did.