Comments on: Social Media and Health Priorities

By: maxillo

maxillo — Tue, 12 Jul 2011 14:08:42 +0000

Message to Blog Administrator.

Hello Administrator, I’m maxillo user, I have posted a message here in your Blog. I ask you if it is possible to insert the link for “rinoplastica” word, so I could get some benefits from your Blog for the site that I manage. I would be very gratefull for this favor.
If you accept my request, the link would be so:
rinoplastica.
Your article talk about Dr. Zamboni, who is an italian doctor, so the link it is not inappropriate, I think.
Bes regards

By: maxillo

maxillo — Fri, 08 Jul 2011 22:13:13 +0000

Many years ago claimed that a doctor was unquestionable, and the patient followed diligently and without question what was prescribed.
Since many years things had already changed. The patient wanted to know what the doctor prescribed before acting. Today the patient wants to interact and participate in all matters that concern himself more or less directly. If you want to undergo a rhinoplasty (in italian: rinoplastica), you want to consult your doctor first and then the more people that have made that procedure by the same doctor. This is a reality, is the new reality and I think that we will not step back luckily.

By: Pberg

Pberg — Wed, 11 May 2011 05:48:07 +0000

There is a cutoff necessary between how much society can sustain. In France no-working/working ratio is approaching 8:1 and projected to reach 6:1 by 2020 as more people go in retirement.

Since the oldest people use up the most resources one can seriously question the sense of extending lifespan.

By: tyro

tyro — Sat, 30 Apr 2011 16:24:38 +0000

I don’t know of any of the actual doctors here descend to watching “Grey’s Anatomy” on tv but the wife & I watch it together. There has been a subplot where two doctors are running tests for an Alzheimer’s treatment when suddenly the wife of a college becomes ill and wants the drug. They’re at in impasse: they can’t get her into the trial and it would compromise their results if they just gave her the treatment, what to do?! Much anxiety ensues till a spot opens up and they get her in, only to rig the tests to make sure she gets the drug and not a placebo (which is handily labeled on the IV bag).

I don’t know much about medicine beyond what I read here and in some pop science books but some things were so obviously wrong that even my wife laughed – labeling the IV bags meant no double-blind, doctors talking about the treatment in front of patients would make it easily guessable, other fun stuff like that.

We’ve talked about how doctors can get so convinced that their drugs or treatment is working that they work with it for years only to learn that it wasn’t helping and probably hurt their patients. In the tv show it seems to be a given that it’s working we see plenty of early evidence. The wife knows this is BS else Alzheimers would have been cured decades ago so we’re both secretly hoping that it does turn out to be negative and they have an episode or two where they look critically at why they believed it was a miracle treatment. But nah, probably not

The bigger question I had was whether or not patients in need would be able to get some sort of compassionate exemption and start taking these meds themselves once there was some promising (but not definitive) results.

In “The Emperor of All Maladies”, there’s a discussion about how many cancer treatments took a lot longer than necessary to evaluate because so many people would refuse to risk getting a placebo and were instead opting for the new treatment. Sometimes drugs, sometimes surgery like radical mastectomy. Is that option still available to patients or has something changed and it’s now harder to get access to drugs under development? Are there some exceptions, are drugs routinely allowed or locked down when they’ve moved on to human trials?

By: BillyJoe7

BillyJoe7 — Sat, 30 Apr 2011 08:58:57 +0000

The elephant in the room:
Why is it not illegal to use treatments with no evidence (from well controlled clinical trials) of effectiveness?

If this were the case, we wouldn’t be continually side-tracked by quack remedies such as the removal of blockages in the veins of patients with MS.

The general public has no expertise and hence should play no role in deciding what should receive research dollars. Research dollars are too precious to be wasted on hypotheses that someone has pulled out of their ass.

By: leonardo

leonardo — Sat, 30 Apr 2011 08:29:57 +0000

I would argue the opposite: all this social media business actually stifles good quality research (the internet is around since 1992; so what’s new?). But I have no proof as you have no proof either.
And on the topic of sending out (into the world) preliminary ‘promising’ results for incurable diseases: I think it only gives false hope to desperate patients and people close to them, but this may not be a bad thing per se.

By: titmouse

titmouse — Fri, 29 Apr 2011 12:31:28 +0000

Maybe we should crowdsource a technical project –e.g., the design of a suspension bridge, an electromagnetic crane, or a small submarine. Members of Oprah’s audience preferred. We might thank them for their participation by entering their names into a raffle for something shiny. Then we build a scale model of thing and film it as it fails in some amusing way.

By: mr. grieves

mr. grieves — Thu, 28 Apr 2011 23:22:40 +0000

There is a difference between the public suggesting research priorities and the public dictating how a particular research question should be investigated. I have no problem with the
public deciding which general areas of science to direct research dollars – to a certain extent. I have a big problem with the idea that the general public should be able tell researchers how to conduct their research. The second case is what is happening now in Canada with CCSVI. The appropriate scientific studies as justified by the available evidence are being completed (and even the justification for this level of research is pushing it, in my opinion). MS patients, their families and to some extent the public at large are not satisfied with this and of course politicians are now getting into the act demanding large scale clinical trials. We cannot allow the scientific process to be distorted based on which treatments sound the coolest or are picked up as a pet issue by W5.

By: Enzo

Enzo — Thu, 28 Apr 2011 20:24:58 +0000

This is such a difficult situation. As you say, desperation can quickly lead to irrational and careless decision making. If the public is to be involved in the scientific discussion surrounding an issue, extreme safeguards have to be in place. I just can’t imagine the infrastructure necessary to accomplish that kind of rapport. How do you avoid politicalization of science? For instance, if the lay public had a say in climate science funding and direction, it may have concluded that funding for global warming research should be cut based solely on scandal-mongering news reporting following “climategate.” The same goes for the public demanding unsubstantiated MS therapies that other physicians/researchers may consider unethical to push through prematurely.

Rather, there needs to be transparent and meaningful involvement of representative of public communities, so that they have a real voice. But this voice will still be tempered by the expertise and perspective brought by professionals…

We already know you can pretty much find a professional that is willing to support any cause (Dr. Oz for alternative med, for example)…So how do you prevent these people from enforcing the public’s misinformed view points?

Tricky but surely worth working on a solution.

By: RickK

RickK — Thu, 28 Apr 2011 17:49:06 +0000

Ahhh, but even information on the failed procedures can be very useful. In titmouse’s example, if a compound has an effect in animals, then assuming it is safe in small doses it can be added an alt-med manufacturer’s list of products. And if it is unsafe in small doses, it can still be marketed as a homeopathic remedy.

Similarly, in the example of MS liberation – if the whole thing turns out to be a complete failure, there will still be a booming industry of liberation centers operating in the US or Mexico and emotional testimonials of successful liberations posted on NaturalNews.

The beauty of the socially open communications is that there are so many more medical soundbites to turn into sCAM therapies.