(Psych Central News) Patients do trust their doctor’s advice but still like to consult the Internet to get better educated and play an active role in their care, according to a new University of California, Davis study. For the study, researchers surveyed more than 500 people who were members of online support groups and had scheduled appointments with [...]

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From Psych Central News.

Doc

I hope plenty of doctors read this as too many are a bit defensive about our internet adventures. I knew I finally got through to one of my doctors that I was doing as much info. gathering as possible before an appointment so I would know what to ask, when he finally admitted that there was no way he could stay on top of everything that impacted all of his patients.

IME, some doctors, like some patients, are going to believe what they believe regardless of the source or its credibility. I once had a doctor tell me he'd consider information from the web as long as the source was credible. Subsequently he dismissed information I brought from WebMD, MedicineNet, Medscape, Mayo, MedlinePlus... He also dismissed studies and/or articles from JAMA, Lancet, and NIH/PubMed.

It finally dawned on me that he'd accept information from the internet as long as it agreed with what he'd already made up his mind about. He wasn't overtly arrogant, but he had an argument for practically anything, and most made quite a bit of sense.

I had another doctor who would consider web-gleaned information as long as it agreed with the summaries (what was sanctioned) on the University (Med School) database.

I get why many doctors are/may be defensive. There are still patients who bring in stuff from Usenet (Newsgroups), Discussion Groups, Blogs, Internet Gurus, etc. without any supporting documentation/science because it may sound credible or plausible to them, or something they want to believe is true. Even if that kind of information happens to be accurate, I can understand why doctors have to dismiss/disregard it.
If they're having trouble staying on top of all the stuff they need to stay on top of, I'm not sure how they're going to find/make the time to read things like the subject article.

Doc

I suspect some doctors don't read studies because they don't know HOW to or understand them. These doctors only listen to sales reps who "interpret" those studies for them. Hence they never develop a true understanding or appreciate progress.

You would not believe how many doctors still do not understand how NSAIDs work in the body. They would call me up to explain a new drug... Arthrotec, was one, Duract (which was taken off the market, another).

When I would tell them PGE1 and PGE2... that would be the "end" of understanding.(Arthrotec). Hence they do not understand the drug IN Arthrotec called misoprostol. But this didn't stop them from ordering it for patients!

Don't assume doctors are well informed ... many have gaping holes in their comprehension of treatments, new developments and safety concerns. Many IGNORE warning letters from drug companies post marketing, on dangerous drug side effects, and therefore those drugs end up being taken off the market.
Propulsid, and Duract, and some others are examples. They ignored the time duration for Duract, and would give 5 or more refills for it, when it was only approved for acute temporary use.
They ignored Propulsid's warning about liver enzyme inhibition when used with diuretics and other drugs. Magnesium decline from diuretics led to many QT deaths, so this drug which was very helpful for gastroparesis was taken off the market.
All of this information is easily retrieved on the internet!

my take on this is that most doctors/neurologists do not know anything about CMT. They may have had 10 minutes on it in med school. So I am the one who has to provide them with "some" information concerning it. Some will listen and some won't. I do not give hours of information either. After all nowadays I believe you have about ten (10) minutes to say what you need to say. I also provide the Medical Alert list of drugs a CMTer needs to be aware of so it is in my file. My information comes from reputable sources such as the CMTA site for one. They should know.

Some have said that they probably will never see another person who has CMT and they "could" be correct in their thinking. However, I tell them that they may have already seen people with CMT but they don't know it. Even if they have seen a person with CMT, we are all different with our symptoms and so it's hard to gauge it from that.

Some of the doctors accept the information and others are less than civil, shall we say, as they do not want to be told even if they know near nothing. I do provide the information in a good way - not a smart know it all way. This is just one reason a CMTer should try to see a doctor/neurologist who does know something about CMT. Fortunately I have nothing else wrong and so I do not have to be fighting this battle very often.

--especially in the United States, has to do with the way doctors are trained.

Though this is now changing somewhat in some places, most doctors were trained under a regime that made the doctor the final arbiter of any questions regarding health and conditions (and the professional structure of the health professions supports and reinforces this). This was an inevitable outgrowth, I'm sure, of the enormous effort the American Medical Association and others made in the first part of the 20th century to professionalize doctors and to standardize medical education, and to increase the esteem in which physicians were held. (Many do not realize that before the 20th century there were not rigid professional/educational/licensure standards in a lot of places, resulting in a lot of "barber/surgeon/dentists", for instance.)

It has resulted in the physician being at the top of most surveys asking about "most respected profession" or "profession needing the most training/intelligence", for many decades. And most doctors are fed this point of view, and believe the hype, to the extent that they are wary of anyone challenging what they feel is their professional knowledge base and/or clinical experience. So they are disinclined to believe other sources of information, no matter how "reputable"--and for most of them, Internet sources are not reputable. And many fear the loss of professional knowledge exclusivity that had enabled them to make good livings for so long.

It is true, of course, that Internet sources vary in reputability--and the Internet is full of copies of sources, such as medical textbooks and published studies, that doctors generally do consider reputable. Some doctors, especially younger ones who have grown up with electronic sources, are finally beginning to come around and not dismissing these sources, and the patients who bring them up, out of hand. But there's still a long way to go.

How about continuing education for doctors being funded by drug coompanies? I think they are trying to regulate it but it looks to me like there are some loopholes.

I very much appreciate the information I've found online but have had little luck presenting it to my doctors. My pulmo told me that if a SE didn't achieve 5% statistical validity it was coincidence and absolutely unrelated to the drug. I had 3 quarters of statistics in college and a bunch of rat labs and researach projects. I don't know if hes ignorant or was just trying to stonewall me. He did admit that my meds could cause 'a little muscle pain' but when I asked him how they did it he said he didn't know and offered no suggestions for treating it.

My PCP told me I shouldn't do too much internet research because 'the situation might be different and I wouldn't be able to interpret it correctly so it might raise my anxiety levels'.....um...I used to work in the mental health field.... I didn't HAVE any anxiety until my pulmo dismissed my pain from the meds over and over. I think other providers tend to defer to him because he is the specialist.

I would be really happy if my doctors would just acknowledge what is happening and help me deal with it, if I took online research articles to my pulmo I think his head would explode. I've learned almost everything from the internet, sometimes I wonder if it has something to do with having a chronic disorder, maybe they just don't want to spend much time on something they can't cure anyway.

judi

While I agree with doctors, about patients going on the Net for further info. Because some of the info can be bogus, or out of date, or just plain stupid rumor.

At the same time, we need to hold doctors accountable.

If the person closest to the patient emotionally(and/or intimately) is intimidated by medical professionals, any research will be a moot point. Because the person won't ask the doctor.