SELF-ADVOCACY: Vital for Medicine and School

The illiterate of the 21st century will not be those who cannot read and write, but those who cannot learn, unlearn, and relearn.
—Alvin Toffler

There are often serious complaints about the current public school system in the States and Canada. Many of these concerns are likely valid—but one should remind themselves—in a remarkably difficult situation. I say difficult, because the functions of schools are wide and disparate: educating, baby-sitting and many philosophical theories—according to some, from socializing to indoctrination to deference to authority in a non-democractic system (just throwing them out there).

I have friends, however, who have kids who have had, if not perfect experiences in the public school system, positively maximized experiences in the public school system.

What was the key, in my opinion? Indeed, in their opinion?

Smart and engaged parents who were (and are) deeply involved in their kids’ public school journey and, more importantly, their learning and curiosity—helping with homework, encouraging them to take advantage of all the extras (and there are many surprising extras), which include the obvious, like sports and drama, but also opportunities to travel, language exchanges etc. Of course, some schools offer more than others, and some parents can offer and/or afford a lot more than others.

But my point is, the key is and was, parental involvement, engagement, and a nurturing of the desire to learn, the desire to be curious—both of which are inherent in the human experience, like the ‘organ’ of universal grammar. Given the chance, generally speaking, these skills/desires will flourish.

This should also mean encouraging the questioning of dogma, media, cultural norms and authority, among other things.

It is important that students bring a certain ragamuffin, barefoot irreverence to their studies; they are not here to worship what is known, but to question it.
—Jacob Bronowski

We have to advocate hard for ourselves, for our children.

MEDICINE

And so it goes for medicine, for our health. I can’t speak easily for the American system—and I have great advantages in my own life, having a retired general practitioner for a father and a doctor of pharmacy for a brother. But to get good medical service in a largely socialized system, one needs to be proactive, even pushy. And to be healthy, in general, one really needs to understand what makes them healthy. Genetics and accidents obviously are huge variables. It isn’t easy to avoid things that don’t make us so healthy, and one could ask, ‘Should we?’ This is a personal decision, of course, decided by one’s nature and access.

All in all, I’m largely not saying anything very exciting or new, so I’ll move onto why one needs to take care of their own health, and advocate for the best possible care, and be intelligent.

This is an article from the not necessarily perfect Discover Magazine, pg 66, called Reckless Medicine, November 2010:

A panel of experts conveneed in 2007 by the prestigious Institute of Medicine estimated that “well below half” of the procedures doctors perform and the decisions they make about surgeries, drugs and tests have been adequately investigated and shown to be effective. The rest are based on a combination of guesswork, theory, and tradition, with a strong dose of marketing by drug and device companies.

It’s important to note here that “a combination of guesswork, theory, and tradition” can also be a wonderful thing. Heck, life has advanced for hundreds of thousands of years by such combinations—as, often, does science today. But the point is clear.

And here’s an eye-opener (again, taken with a pinch of salt, hopefully not in the eye), same page:

A 2002 study in the Journal of the American Medical Association (JAMA) found that 87 percent of guideline authors [writing suggested guidelines for health problems] received industry funding and 59 percent were paid by the manufacturer of a drug affected by the guidelines they wrote. Evidence of resulting conflicts continues to mount.

A report published this year found that authors of medical journal articles favorable to the controversial diabetes drug Avandia (thought to increase the risk of heart attack) were three to six times as likely to have financial ties to the manufacturer as were the authors of articles that were neutral or unfavorable.

And, of course, advertising doesn’t work (sarcasm).

Advocate for yourself. Arm yourself with health, with good choices, with information. Come in with a list of questions. Get them answered. It can save your life. Heck, it might even improve your health.

So for education and medicine (and everything else), never stop asking questions.

You’re great, the body/mind complex is stunning and responds to intelligence (and is intelligent), and you’re worth it,

Pete x

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4 Responses to “SELF-ADVOCACY: Vital for Medicine and School”

  1. Sue says:

    Hi Pete,

    This is a great post and very timely. It is so important to learn to advocate for ourselves in all situations where we are dealing with “professionals” and experts. In order to effectively advocate for ourselves, we need to learn a few other skills, including: learning how to tune into our inner wisdom or intuition; challenging the notion that we shouldn’t or don’t have the right to question or disagree with experts such as our health care providers; learning how to think critically–as in being discerning about how we evaluate information we read or hear about–and ask the “right” questions; and, knowing how to search for credible information or resources (very important as the internet contains as much junk information as genuinely helpful answers). I’d like to see these skills taught from as young an age as possible.

    Thanks for all your inspiring and informative posts.

    Love & blessings
    Sue

  2. Karen says:

    Hi Pete,

    As to the importance of self advocacy in matters medical, I couldn’t agree more. As Sue said, patients need to be informed and unafraid to disagree with a treating physician…or at least unafraid to ask lots of questions. And parents have to be willing to do the same with their children’s teachers; to be a child’s advocate when difficulty occurs.

    However, 2 of the paragraphs you quoted are, in my humble opinion, somewhat misleading. The paragraph that begins “A 2002 study…” gives the impression that pharma companies regularly have input into the writing of clinical guidelines; however, I understand this paragraph to have a different meaning. Here’s why.

    When physicians are involved in publishing anything medically related they must make conflict of interest or disclosure statements. This is a disclosure of any monies ever received from a pharmaceutical or medical institution for any reason including grants from non-profits. Most physicians list multiple financial ties and use the same disclosure statement for everything they author, updated as necessary. So 87% received funding, but not necessarily for the current guidelines or manuscript. Because a physician has listed potential conflicts of interest doesn’t mean a conflict has occurred. The statement is there for the purpose of transparency.

    Pharma companies do fund guidelines, but they don’t have input in legitimate guidelines. The majority of clinical guidelines are published as consensus statements by groups representing the medical specialty treating the disease state involved. For example type 2 diabetes therapy initiation and adjustment guidelines published by the American Diabetes Association and the European Association for the Study of Diabetes, which are the guidelines most often used by physicians around the world in treating type 2 diabetes.

    Within guidelines, medication is usually discussed in terms of classes of drugs, unless there is only one drug in a class, or a particular drug or drug combination has become, because of proven efficacy, the drug(s) of choice for a disease state. And then, only the generic name is used. If a drug falls into one of the exceptions above, the manufacturer will usually fund those guidelines, but funding doesn’t always buy input.

    The next paragraph is also misleading. Albeit the Avandia situation was not typical; however, I suggest that authors favorable to a certain drug obviously have a higher likelihood of having financial ties to its manufacturer. Data on which physicians prescribe what drugs and how often can be obtained by anyone through medical statistic companies such as IMS Health Inc. If you like and use any product, you are more likely to be asked to endorse it. If you have issues with a product and write unfavorably about it or respond to a favorable article with concerns, the manufacturer isn’t likely to offer funding.

    Text such as this from Discover Magazine casts a usually undeserved shadow over the medical editorial process, which is regulated by many overlapping rules, guidelines, and organizations, from the FDA and other international organizations that regulate drugs to CONSORT to journal peer review. This is not to say there are no abuses or disregard for accepted practices, because when it comes down to it, even journal articles are, as you pointed out, a form of advertizing. My point is that abuse is not as wide-spread as the media would have us believe, and a little disinformation can, at times, outrun the truth.

    But please never stop helping the truth to catch up!

    Love to you and those you love,
    Karen

  3. Hi Sue

    Happy New Year. Thanks for those reminders to anyone reading. We really do need to strengthen the “muscles” that build up our abilities to be self (and even community) advocates, to feel strong, yet making sure that strength is informed.

    How to do that? I think it starts with parents. It’s hard to impose certain ‘paths’, and dangerous, too, for one person’s path is another person’s punishment. But I am with you. And Karen offers some great details to remind us of how much detail and effort is ALSO being used to do a lot of cross-checking.

    Hope all is well. Sending lots of love,

    Pete xo

  4. Hey Karen—great and very important points. My brother and I were talking about ‘evidence’ etc. quite a bit over Christmas. And I was aware, as I hinted, at the lack of clarity of Discover mag. This paragraph you wrote is really important—basically the bias of the bias. That is, there is a bias, and bias plays itself out into what appears to be a bigger bias…I think:

    I suggest that authors favorable to a certain drug obviously have a higher likelihood of having financial ties to its manufacturer. Data on which physicians prescribe what drugs and how often can be obtained by anyone through medical statistic companies such as IMS Health Inc. If you like and use any product, you are more likely to be asked to endorse it. If you have issues with a product and write unfavorably about it or respond to a favorable article with concerns, the manufacturer isn’t likely to offer funding.

    What is also interesting is that the amount of funding one receives is not mandatorily exposed and, even more than that, if one gets a huge grant, or any grant, it is difficult to know how much is directly related to the evidence at hand. In other words, how would the amount/its breakdown and use etc be explained—without pages of data—at the bottom of a paper? But you surely know much more about this than I—and your comments are wonderfully expansive…

    Limitations notwithstanding, I have a soft-spot for transparency, perhaps particularly in the medicine/drug fields. You should have seen the economists—even the biggest folk at Harvard—who had zero issue with conflict of interests. Eventually, as the questions got tighter, many squirmed, but it was eye-opening. Check it out if you have a spare milli-second…

    Finally, and here’s the rub: most every human likes to be funded!—it makes eating easier.

    Lots of love,

    Pete

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