Caveat lector--failings in modern medical information
Caveat emptor = let the buyer be ware
Caveat lector = let the reader be ware.
For those with an interest in health-related information please note the following (if you're a Dr. Oz fan, you probably should not read this--this also applies to Dr. Phil fans).
A previous post disclosed flaws in medical journals, particularly the New England Journal of Medicine: detailing the encroachment of greed in medical publishing. That post dealt with the editor(s) of the world's premiere medical journal new-found penchant for discarding ethics in favor of recompense (either directly--in the here and now--or indirectly, as a sort of delayed payment for favors done).
A recent analysis reveals that the problems are more wide-spread, although not necessarily due to corruption--but often due to indifferentness (diffidence) or laziness or just the desire for academic prestige.
This poses a dilemma not only for Joe and Jane Citizen but also for well-meaning physicians. It's well known that Big Pharma heavily weights the evidence presented to the FDA regarding drug approvals (topic defered here). Even if we assume all data from phase 3 trials (efficacy trials) is correct, which obviously it isn't, there still exists an enormous barrier to learning reliable information about diagnosis, evaluation, and treatment of disease.
Okay, disillusioned but not ready to give up the fight to be medically informed, you might think that the "Truth" can be found on the internet.
Almost all practitioners take advantage of the huge resource offered by the National Library of Medicine (Pubmed). So the doctors can access from a list of thousands of journals--from all over the world. But this does not solve the peer-review problem.
Even sub-specialists have difficulty keeping up with all the latest information, take for instance Ben Carson's prior medical bailiwick of pediatric neurosurgery for example. Even this highly esoteric and narrow field is subject to an enormous amount of literature-- weekly .
Active practitioners, regardless of their field of specialization, cannot hope to keep up with the daily flood of new medical reports. Many resort to reading synopses of articles pertinent to their special, along with some journal articles, books, and the occasional medical conferences (the latter two ain't cheap).
Those of you who want to get reliable information about medical issues, will think that the internet will reveal the "Truth". If only that optimism can be justified--but it can't. Two reasons exist for this, at least:
1. most health websites rely upon commercial funding, be it Big Pharma or other special interest groups. This feature alone makes much of the information suspect. Examples include Medquest, WebMD, Druginfo.com and many others. This is not to say that some of the information is incorrect. But consider the sources.
2. GIGO" Garbage In, Garbage Out. Much of this misinformation comes from "sources" which hide their financial ties. Some of it comes from anecdotal reports from patients or patient advocacy groups. Please do not take this as a blanket condemnation of such advocacy groups, many of which adhere to high ethical standards--indeed somewhat higher than more than a few medical journals. Beware of anecdotes.
What are we to do about this?
I will suggest partial remedies, although certainly I don't have all the answers.
1. Insist that medical publications indicate financial or commercial bias by the writers of journal articles and editorials.
2. Make public the financial support of various medical websites.
3. Tighten peer-review procedures.
4. Improved teaching of health-related issues in K through 12 education
5. Emphasize ethics during medical school and any other type of health-oriented school (e.g. nursing, dentistry, osteopathy, chiropractic, etc).
6. Promote expansion of open-source medical publications which are often free and available online.
7. Question your physician about his/her diagnosis, testing, and treatment plans --in language understandable by normal people. If you do not get satisfaction, get a second opinion--or better yet, find a physician who will take the time to inform you about the decision making processes employed in your particular case.
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Comments
Yes, I pretty much assume whoever does research on
pharmaceuticals has a financial interest in finding them safe and effective, so always approach with extreme caution. Sometimes one has no choice, but a decently healthy lifestyle can prevent a lot of problems. If I have to take something, though, I read the insert thoroughly, stay alert for side effects, and try to use the smallest amount for the shortest time.
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I totally concur that there are too many agendas
and it is likely that since medicine has 'profits' in the practice, especially in the US, that we all unwittingly are buyers. Physicians become complicit when certain practices are performed. My husband was convinced to have an implanted cardiac defibrillator "installed". Why that brand? I think there were several on the market. And why was the product representative in the surgical suite?[Backstory: he had a cardiac event, and coded in the ambulance, on a ferry, and was shocked back. He was Dxed with a heart rhythm called long Q-T. That might have been genetic, but he had not had an electrocardiogram done before that showed that, and the proximate cause of the episode was electrolyte imbalance due to GI upset. So long Q-T is a survivable syndrome, just don't get an electrolyte imbalance. He opted for the implant, it never activated, and things went south with his health and he died] Awful truth: when he was near-death, I made sure that the device was deactivated with a magnet so it would not try to shock him back.
I am a scientist (PhD, genetics) and I was his advocate and translator through this stuff. when he died, and since his father had died of heart problems (maybe), I worried about a genetic link and his sister and my children were ECGd to check for long Q-T. Aha, sister had it, and against my advice got a defibrillator implant. My children had normal ECGs. Out of curiosity, I investigated that syndrome further, and lo and behold, the antidepressant that both brother and sister ate like candy, Prozac, had a listed side effect of long Q-T. No one ever mentioned that.
In my mind, the mini-experiment would be to change medication on the same person and see if the syndrome disappears. But depressives are unwilling to stop something that works for their primary complaint. At least the one I know. But that would be a great experiment.
My second observation is that Americans want the quick fix, and will rush toward a cure because one is offered. Same sister-in-law (also a wingnut) is a hypochondriac whose knees are going. A"stem cell therapy" is offered, to inject "stem cells" into the knee cartilage to make new cartilage. From what I can deduce from medical literature, that does not work, except anecdotally by patients who paid for it. There are "clinics" who do this, for thousands of dollars, and the prices vary, also by thousands of dollars. Too many red flags for me. Sounds rentier to me. And so it goes.
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Patient advocacy in its highest form
Bravo to you for your insightful intervention (some of it perhaps too late) on behalf of your husband. The long Q-T syndrome can be lethal, especially as in your husband's case due to electrolyte imbalance--but also as you noted the drug-related enhancement of the syndrome in your brother and sister. Too many doctors are unaware of available medical knowledge of side-effects and more importantly of drug-drug interactions. This does not invalidate that the decision for implantable pacemaker-defibrillator was the proper thing to do. In your husband's case, an attack of severe gastroenteritis with its associated electrolyte imbalance could be fatal.
My personal case is that I have an implanted pacemaker-defibrillator which my cardiologist recommend. I have known my cardiologist for over twenty years as friend and colleague, so have no doubts about his erudition and concern for patient welfare; i.e., he is a patient advocate too. I am pleased to have him for my cardiologist--3 months post pacer/defibrillator installation, I had an episode of ventricular tachycardia--my first and only such episode. Had it not been for that device, I would not be amongst the living.
Unfortunately, most patients do not have the advantage of knowing their patients very well--so like you, they and/or their families must be their own advocates.
Marcia Angell was the editor of the NEJM.
She quit saying that the way research was done and presented, was not science-based and she could no longer participate.
You may choose to look the other way, but you can never say again you did not know. ~ William Wiberforce
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I also want to say that I am receiving
a nurse's view from my daughter, an RN at the local hospital who is also completing her BSRN and continuing for her MS to be a NP (so may acronyms!). There is formal instruction in ethics, and she has already been (2 years' RN) in situations where a nurse has questions about physician ethics regarding a patient. In her current situation, nurses are encouraged to speak up and question the physician, I am unsure how much weight can be put in force. Her hospital is currently non-union, the hospital "prefers" it that way. Another layer of ethical treatment that must be considered. At service (or product) end.
Hey! my dear friends or soon-to-be's, JtC could use the donations to keep this site functioning for those of us who can still see the life preserver or flotsam in the water.
There's a reason that nursing is the most trusted profession
nationally, year in and year out. We are imbued with the principle that WE ARE THE PATIENT ADVOCATE-and most take that to heart, deeply. I've butted heads with many an order and many a physician-and if I felt it was important enough, I stood my ground, loudly. My mantra was "It's MY license and OUR patient, and I'm not doing ANYTHING to put either in jeopardy".
Nurses ARE patient advocates
Julia W, I commend you and your sisters and brothers in the nursing profession. You and they are certainly the patient's advocates--often the last line of defense against unwise or mendacious counsel. A half century ago, physicians were imbued in medical school to take the Hippocratic Oath seriously AND TO BE THEIR PATIENTS' ADVOCATES. Alas, those days have passed and with it many of the things that made medicine a profession. Now I am afraid that Medicine has devolved into a business--a great loss to the public--and to the physicians themselves.
If you have training in research methodology (most MDs do not)
and if you read medical journal articles, you will be horrified by an awful lot of what is published and then presented as firm recommendations, from medical groups and on the morning news. And that is without even considering the validity of the data, which has all the problems mentioned above.
Some of it is honest ignorance, because you'll often see all the steps they took proudly detailed - steps which invalidate any conclusion anyone could draw from their data.
Sometimes you'll read a sad little note from a statistician, saying you really shouldn't do X, Y, Z. Doesn't seem to make any difference.