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The Unfortunate Demise of the Case Study in Medicine
I was idly reading the Huffington Post on my iPad while waiting for my wife and our pal to come back from a shopping expedition and came across an interesting piece on AutoImmune Disease This is the bit that caught my eye:
Historically medical discoveries originated from physicians' keen observation of their patients' diseases and responses to treatment. Doctors reported their findings to their colleagues or published them as case studies. Today these "case studies" are often dismissed as "anecdotes" and have become increasingly irrelevant. Instead, we now focus on randomized controlled trials as the only standard of "evidence". Sadly, this dismisses the experience of thousands of patients and physicians as they apply new scientific findings to treat difficult conditions.
Basic scientific discoveries often take decades to be translated into medical practice. Unfortunately, this prevents millions from accessing therapies that could benefit from them now. The determining factor in deciding whether to try a new approach with a patient is the risk/benefit equation. Is the treatment more likely to help than harm? How risky is the treatment? What are the side effects? How dangerous or risky is the current approach to a problem? How debilitating or life threatening is the disease being treated? These questions can guide exploration toward innovative approaches to chronic disease.
This resonated particularly because I have been trying to tidy up my chaotic electronic filing system and came across a piece from 2002 Why Don’t doctors listen? and this is along similar lines:
….. listening was considered essential, an integral part of the art of medicine. Now insurance companies have decreed that listening to the patient is a waste of time and will not pay for it.
While the physician's traditional role was to balance the science of medicine and the art, somehow the balance became instead a competition, a question of which was more important. Science won. Science is our new religion, the savior that will rescue us from all human problems. This situation was not imposed on physicians: we did it to ourselves. When the managed care industry set out to eliminate waste from the delivery of health care, it asked doctors to define quality medical care. We answered, and continue to answer, in the language of science only. Good quality medical care, we say, is:
Making a correct diagnosis with the least effort
Providing the latest treatment, one best treatment for each disease, as defined by scientific studies in prestigious medical journals.
I am only raising this point because from time to time there is criticism of so called anecdotal evidence being used in the decision making process, yet all of us, as we go about our lives make decisions on this basis time and again. We ask people for their advice, what they did, how it worked for them when we buy cars, TVs, DVD players. And, I think we tend to continue to do this even with decisions about much more serious issues like prostate cancer. How much emphasis we place on the views of other, non-professional people will depend on our personal views of life.
There was a deal of criticism when I started to collect “anecdotes” from men who had been diagnosed with prostate cancer and had made their various decisions. I thought these were pertinent in most people’s decision making process. One man in particular who labeled himself as a ‘scientist’ and those who challenged the absolute truth of science as ‘artists’ was particularly vociferous in his opposition. He claimed that making these anecdotes was extremely dangerous despite the warnings I incorporated. I still do not believe that there is any inherent danger in men reading the experiences of other men and I believe it would be very helpful if doctors also paid a bit more attention to the reality of what happens, and not merely to scientific studies. In a recent exchange, Off-List, with a man around one of my postings, which challenged some basic ‘scientific views’ I was able to point to the anecdotal evidence in a number of stories which demonstrated that his ‘scientific truth’ was not universal.
Just some thoughts knocked together on my iPad while I wait like Patience upon a monument – if I were home I’d be trying to catch up on the mountain of Updates.
Re: The Unfortunate Demise of the Case Study in Medicine
Excellent piece, Terry.
Why don't urologists and oncologists spend some time studying PCa patient forums?
We, the PCa sufferers, have learned far more from such forums than we ever have from our consultants.
And because of what we have learned through so called 'anecdotal evidence' we are now in a position to thoroughly question any treatment plan being thrust upon us rather than eagerly accept (and deeply regret later).
Re: The Unfortunate Demise of the Case Study in Medicine
Each Monday as I go through the IMRT process, I meet with my Doctor right after the treatment and that is what it is all about.. Listening. We don't get very technical, but discuss issues, problems, direction and results. This last Monday was odd in that the tables turned a bit. The subject came up about my TURP and the Dr confided to me that he is facing the prospect of that procedure and the following 15 minutes or so were devoted to him asking me for advice and drection.
The conversation leveled the playing field and we both became mentors to each other. It very much humanized the process.
Re: The Unfortunate Demise of the Case Study in Medicine
Yes, Terry, I agree with George. An excellent piece.
I am just back from my one-year-after-diagnosis visit (My Story update to follow). I attempted to start a dialog with my urologist about how helpful your web site, and insight, have been. I no more than got out the words "I have found the web site run by a friend in Australia..." out of my mouth when he said, "You have to be careful what you read on the internet, you never know when you are talking to a pedophile." and he walked out the door.
Re: The Unfortunate Demise of the Case Study in Medicine
LOL- yeah the internet is all bad and you can never learn anything syndrome. Men are not capable of analyzing anything or sorting out anything on their own, they must be lead by an expert? When we look close alot of these 'experts' are biased, agendad and not totally well informed overall...maybe very good at their particular sales station in treatments (we would hope).
Dr. Strum helped make it very clear as to what the system shows us as 'experts' in many of his posts, writings, books and such. He has been proven right most often as I have witnessed in my many opinions and almost 9 yrs. of 'internet' and groups interaction. Dr. Strum just retired and mentioned that the collaboration theory amongest doctors is about nil from his skill sets, seems almost none of the local docs treating patients wanted to talk to him on behalf of their patients, whom wanted the collaboration effect. Everyone is supposedly all knowing and couldn't learn from someone like him whom have about 40 yrs. collectively in this area. You need to question everything and all the time, and get envolved in your own decisions...or be the door mat for whatever protocols. We can imagine how wonderful the US health care will become, it reflects the culture and society's thinking. We may be from the good old days at this juncture.
