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Medical Blogging: Confronting the Dark Side

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Last two weeks medblogosphere was abuzz about the closing of GeekNurse. Apparently some over-zealous hospital managers could not stand an employee's public persona and growing following.

This brings up a few questions:

  1. What is wrong with medical blogging?
  2. What can doom a blog or make it sustainable?
  3. Role of blogging in medical professional's public identity
  4. When problems occur, who is responsible?
  5. What is the way going forward?

I like the approach taken by Darren Rowse to examine weaknesses of blogging in general, invoking example of a religious debate where opposing sides were asked to find flaws in their own argument:

The result was fascinating - rather that the two groups coming away with reinforced hatred of and anger towards the other the event was incredibly constructive. Both groups found that they learned not only a lot about the other group - but about their own perspective.

So let me offer a few thoughts of my own on the questions asked above:

1) What is wrong with medical blogging:
Medical blogging is still a very new phenomenon. A key challenge it poses is in giving power to individuals at the expense of institutions. While similar movements have been around for a while in politics, media and technology, this is a shock for healthcare organizations, generally more sensitive to being questioned.

2) What can doom a blog or make it sustainable:
Being unclear about a blog's purpose and its relation to your public identity cannot do any good. Whatever you see as the main motivation, be sure you allocate enough time to achieve the goal. A good rule of thumb: if you do not want something printed on the front page of your hometown paper, do not blog it!

3) Role of blogging in medical professional's public identity
Many will disagree with me here, but I am all for embracing full blogger identity disclosure. This may be harder for professionals employed by institutions (see Item #1), than for those in private practice, but the bottom line is: total anonymity is a pipe dream. Why not embrace your online identity as integral part of who you are?

4) When problems occur, who is responsible?
Do not write or do something unless you are willing to stand behind it when questioned. Same goes for pointing fingers in the direction of others when controversies occur. Bloggers lose credibility by "shoot-now-think-later" attitude. If you want to be snarky, stay anonymous but do not expect to earn much trust.

5) What is the way going forward?
Medical blogging is here to stay and grow. Bad PR from firing bloggers is terrible. Institutions will learn to live with being publically questioned and will eventually embrace blogging. But bloggers need to develop a "code of honor" to keep the discourse civil. There will be some turbulence on the way there, but it shall pass too.

So if you are interested in drawing up "the code" drop me a note or leave a comment. Professional journalists have done something like that long ago. There are a couple of ethics standards for health-related websites. Medical blogs should be next to professionalize.

What else is missing in this picture? What else about medical blogging that needs fixing?

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#1: Amazon
from Amazon on Wed, 02/14/2007 - 2:21pm

There is a great blog post at: "Medical Blogging: Confronting the Dark Side | Trusted.MD Network", I think readers here at Amazon need to read that post...

Comments (8)

Submitted by Steve Beller PhD on Tue, 04/04/2006 - 4:42am.

I don't think there's anything about blogging, per se, that is the problem. Any open forum can lead to flaming, rip-offs, and other undesirable behaviors. Active screening by a moderator and blogger identity exposure can help. But a good deal depends on the purpose of the virtual communication vehicle.

Lengthy, multi-threaded conversations, that my include the exchange of and discussion of files/documents, are typically required for problem solving, policy creation, and decision support. There are better vehicles for this than blogs. Blogs are best, imo, for varied topic presentations and brief conversation about them. That is, a kind of fast-paced information and opinion source.

Yet, no matter what type of virtual communication vehicle you use, belonging to a community of people of who trust and respect one another is absolutely essential for its success. Posters (initial and responders) must feel safe in an environment in which they can freely speak their minds and be heard. If such conversations are likely to give rise to inappropriate retalition (as opposed to constructive debate and creative abrasion), then they should not be held in public, but rather in a private (members only) type forum.

Steve

 

 

Submitted by hippocrates on Tue, 04/04/2006 - 11:30am.

I agree that the problem is not with blogging (or similar media) per se. But as the case of GeekNurse shows, a mis-understanding could lead to bad things.

But I would note that blogs are more than conversations. They have become an individual's way to reach significant and targeted audiences. This gives many "communication gatekeepers" a severe cause for discomfort.

So the question is how to prevent this mis-understanding and educate "the rest of" healthcare ecosystem about the value of blogs and open communication.

Submitted by 3mgamom on Wed, 04/05/2006 - 12:22pm.

Because health care is treated more or less like a normal good (at least in the US, I know very little about other countries), the corporations that run hospitals are primarily worried about their reputations, and so they don't like any communications that aren't run through their public affairs offices. If an MD goes off the reservation on their blog and causes someone to make an unwise health decision, that could cause a law suit, which effects the reputation. It all goes back to the source. Oversimpllified, I know.

Crazed parents with sick kids trolling the internet for orphan drugs, sympathy, etc., looking for anyone and anything to help them don't help the problem either. I rant about the doctor who drives me crazy, though I try to admit my bias and be moderately fair. However, I am not the only person in cyberspace who questions her attentiveness to detail. Not that it makes it right. But I can see how it makes 'the medical establishment' crazy and how they would not want their practitioners participating.

Just my $.02!

Submitted by hippocrates on Wed, 04/05/2006 - 9:04pm.

Blogs and open media are shifting the balance of power from institutions to individuals and it is a GOOD thing.

This change is inevitable and irreversible. Look no further than technology, news and politics to see how it can happen. Howard Dean's campaign. Conservative bloggers pushing out Dan Rather. Tech bloggers overtaking trade press as top PR channel.

Healthcare is next, even though this transformation is in the earliest stages. The "medical establishment" will be called to answer how well they serve their patient and physician constituencies.

You should not apologize, 3mgamom. If the system fails to address your problems, nobody has the right to gag you, though you could be questioned publically. Now everyone's reputation can get very public very quickly.

Smart players will get this early and take control of their reputations online, before others define them. On the balance individual consumers and physicians have more to win than lose.

Submitted by Anonymous (not verified) on Sat, 08/12/2006 - 8:24pm.

Before anyone gets on the bandwagon to defend doctors and the U.S. medical system it is not just the general public that is fed poor information, but physicians are also presented distorted research and bombarded with the "latest" treatment options for vaguely defined symptoms and lab tests that have somehow become "diseases". 

Cases in point: Hypercholesterolemia, restless leg

Hypercholesterolemia is a lab test, not a diagnosis. In 1989 researchers in Israel predicted potential adverse effects from treating elevated cholesterol with the indiscriminate use of statin drugs because hypercholesterolemia can be a symptom of a latent porphyria. 

It is no scientific secret these genetic disorders place people at risk for multiple, and I mean multiple drug reactions.  The first recorded drug reaction with a porphyria occurred in 1889.  In the 1950's physicians discovered what barbituates and sulfonamides could do to these people.

Sure enough both rhabdomyolysis and pancreatitis have been associated with statin drugs and are known complications of neuropsychiatric porphyrias (also known as acute hepatic porphyrias).

"Take this drug until your muscles hurt" is lousy medical advice. For some reason the term idiosyncratic drug reaction has become synomymous with "no explanation required" and the general public is convinced adverse drug reactions are extremely rare and not impacting healthcare costs.

More recently commercials have been running for the treatment of the ill-defined symptom of "restless leg" promoting the indiscriminate use of Requip, a drug that was recently reported associated with psychosis.

Restless leg is a symptom of peripheral neuropathy that was linked to iron deficiency/iron or heme disorders years ago and has been associated with the following disorders: neuropsychiatric porphyrias, attention deficit disorder, conduct disorder, "growing pains", fibromyalgia, multiple sclerosis, rheumatoid arthritis, Parkinson's disease and latent diabetes.  How vague can you get? 

Europeans have treated attention deficit disorder and conduct disorder with iron supplementation. South Africans have stabilized patients and high risk family members with multiple sclerosis with iron supplementation.  Why in God's name would these kind of reports be ignored?  When did the U.S. medical system stop practicing common sense?

I am not a far out crackpot bringing up the issues of "rare" obscure genetic disorders.  The heme system is the biological equivalent of chlorophyll in plants. The system not only captures light and energy, but it is a major player in regulation of cell metabolism and biological systems in mammals including the neuroendocrine and cardiovascular systems.

Any physician who claims he can rule out all the potential disorders (specifically the low penetrance neuropsychiatric porphyrias) impacting this system with present technology is either lying or ignorant. The urine screening test they are relying on in medical emergencies pretty much sucks and is even less reliable in prepuberty children. There are also multiple DNA subvariants of each porphyria and limited or nonexistent enzyme tests.  There are over 240 genetic variants of acute intermittent porphyria alone.

The bulk of the genetic carriers of disorders impacting this system are latent and vulnerable to rising environmental hazards including "new and better" drugs. We are unmasking latent porphyrics at an alarming rate. 

Did you know autistic spectrum disorders are being traced to the enzyme sites of neuropsychiatric porphyrias by Finnish researchers? Did you know genetic polymorphisms of hereditary coproporphyria have been linked to an increased risk of damage from mercury?

Did you know highly symptomatic porphyria patients who were experiencing severe cyclical acute hepatic porphyria attacks had their symptoms completely shut down by simply developing type 2 diabetes?

I dare you to ask the appropriate questions. You can start by asking physicians why they use magnesium sulfate in pregnant women with preeclampsia and eclampsia and not antiseizure drugs. Did it ever occur to anyone a fetus could inherit a porphyria from either parent and present in utero with damage to the placenta? While you are at it check out the high rates of eclampsia in India and the incidence reports of acute intermittent porphyria in India.

If you do not want to take my word for this then at least check out the information, but whatever you do don't take their word for it! Don't give away your power by maintaining ignorance.

Submitted by Dr. Rob Lamberts on Sun, 08/13/2006 - 5:35pm.

If you would put your name on the line with posts like this.  It is good to know the credentials of the person posting.

Rob

Augusta, GA

New Websites:

Musings of a Distractible Mind

Ambulatorycomputing.com

 

Submitted by hgstern on Sun, 08/13/2006 - 6:09pm.

The absence of such is also a message: how credible is someone who won't even take credit for their own thoughts?

Just my $.02 

Submitted by Anonymous (not verified) on Sun, 04/15/2007 - 9:22am.

Depending on someone's claimed credentials in a blog is evidence of naivete'.

A major point of the message is that you need to do your homework and not rely on apparent authority. You need to rely on real authority, which means following up on the clues that were laid out clearly in the message.

A truly knowledgeable person with a reputation to protect may wish to blog and not be associated with the blog, in order to protect that reputation.

 



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