Dialogues and debates

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Dialogues and debates

Postby Leonard » Thu Jan 13, 2011 5:04 am

Dear dr. Sclafani,

You are right that we have entered a new era of Internet dialogue. But this dialogue is no longer exclusively the domain of doctors.

A truly global invisible College emerges, a labyrinth or network that is complex, self-organising, self-adaptive, with many interpersonal links, small worlds, and redundancy. Brains circulate, knowledge and information circulate. There is little control over who participates. Patients are extremely motivated and its their perspective that fuels this particular debate.

Unexpected connections arise from data placed on the Internet, as you say because the traditional vertical silos now fork into thousand of thin lines; with on the other side a very hungry public, that is mainly us patients. And we combine and connect.

The web reshapes or revolutionises how we learn and create and overturns old notions of ownership, expertise and creative freedom. Knowledge is increasingly managed in a global context. And that is also very true for our little field.

The problem with your call to get medical people involved in this dialogue is a cultural issue. Here, the medical sector is not different from any other sector in the economy that cling on to old prerequisites etc etc – I can write a book about that. It will take many many years and lots of energy to get this culture changed, and a lot of new blood I might add.

The low-glucose hypothesis that I put here on TIMS on another thread and that was the result of some of these unexpected connections on TIMS is a good example of the unbeatable power of the Internet. The reorganisation of this world continues, see for instance:
http://www.outgrid.eu/site/pagine/home.php

The week after next, there is an evening meeting with Members of the European Parliament to discuss these sort of issues (The European Parliament is like the US Congress and although probably not quite as powerful, it co-decides in the world's economically most performant market, a market of 27+ European countries and over 500 million citizens).

I have posted the quote below here before but would like to repeat it. It is from the book entitled The Starfish and the Spider: The unstoppable power of leaderless organisations by Brafman and Beckstrom, which captures very nicely what is going on here.

I quote from the book: We look for hierarchy all around us. Whether we are looking at a Fortune 500 company, an army, or a community, our natural reaction is to ask, Who is in charge? This book is what happens when there is no one in charge. It is about what happens when there is no hierarchy. You would think there would be disorder, even chaos. But in many arenas, a lack of traditional leadership is giving rise to powerful groups that are turning industry and society upside down. In short there is a revolution raging all around us...

... The harder you fight this force, the stronger it gets. The more chaotic it seems, the more resilient it is. The more you try to control it, the more unpredictable it becomes. Decentralisation has been lying dormant for thousands of years. But the advent of the Internet has unleashed this force, knocking down traditional business, altering entire industries, affecting how we relate to each other, and influencing world politics. The absence of structure, leadership, and formal organisation, once considered a weakness, has become a major asset.... unquote

To prepare ourselves for this new order will be a major challenge for all of us.

Best regards,

Leo
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Re: Dialogues and debates

Postby Cece » Thu Jan 13, 2011 7:31 am

I disagree, Leonard, I think it is a worthy experiment on his part. If there are other MDs who would like to participate but did not feel up to the task of engaging with all of us (really, if you were to add up how many hours Dr. Sclafani has spent on us here, it would be a mighty number), then this thread is an easy way in.

As much as we each bring our own skill set to the forum, the doctors and especially the IRs bring their special knowledge.

If I were an IR, I'd have been lurking in Dr. Sclafani's thread, what an incredible resource it has been! He's posting images of never-before-seen CCSVI abnormalities, the day after they're discovered, and then oh here's Zamboni's response to it! I am blown away.
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Postby LR1234 » Thu Jan 13, 2011 7:39 am

I also think it is a worthwhile experiment.

I am hoping that many vascular/neuro dr's get involved as it would be good to hear all opinions from the medical profession only.

I think it is good making it exclusively for the medical folk because as much as we have gained valuable knowledge regarding MS and CCSVI/vascular system we have no experience at seeing/treating hundreds of patients which these dr's do have, we are also too close to be unbias.
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Postby Algis » Thu Jan 13, 2011 8:21 am

I fully agree with Leo and with Cece...

As much as time has changed and that the "informative" gap is closing; it still that I do not know enough medicine to join a professional thread... They spend their life doing that.

"Redde Caesari quae sunt Caesaris, et quae sunt Dei Deo."
(Give back to Caesar what is His; but let to God what is His ~ Approximate translation).

It would be for them like a sound engineer having to filter out the noise in background. It will help them not to interfere...

- Again only my Tuppence -

but persist and sign :P
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Postby drsclafani » Thu Jan 13, 2011 9:08 am

leonard
i think that patient centric dialogue is paramount. however for the sake of a medical discussion by experts, it would be distracting and confusing to have to respond to comments that do not conform to the thousands of hours of learning without disrupting the flow. moreover, it would be difficult to know whether the comments were from an ignorant doctor,(intolerable), or a patient trying to learn.

i spend much time commenting upon factoids that require clarification, exposition, teaching, patience. The goal of the Doctor thread is to get quick, strong opinions from people who are diagnosing and treating.

Let's give it a chance. I made a parallel thread for patients to discuss. I am happy to enter or lurk if you like

s
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Postby silverbirch » Thu Jan 13, 2011 9:21 am

Its a fantastic idea and I look forward to watching it grow.....
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Postby DrCumming » Thu Jan 13, 2011 9:42 am

drsclafani wrote:leonard
i think that patient centric dialogue is paramount. however for the sake of a medical discussion by experts, it would be distracting and confusing to have to respond to comments that do not conform to the thousands of hours of learning without disrupting the flow. moreover, it would be difficult to know whether the comments were from an ignorant doctor,(intolerable), or a patient trying to learn.

i spend much time commenting upon factoids that require clarification, exposition, teaching, patience. The goal of the Doctor thread is to get quick, strong opinions from people who are diagnosing and treating.

Let's give it a chance. I made a parallel thread for patients to discuss. I am happy to enter or lurk if you like

s


i agree :)
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Postby HappyPoet » Thu Jan 13, 2011 9:54 am

Dr. Sclafani, I cannot say this enough -- your idea is brilliant.
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Postby Leonard » Thu Jan 13, 2011 10:18 am

@ dr. Sclafani, thank you for your reaction.

In Europe I estimate we have at least two hands full of doctors who have done several hundreds of procedures each. And I know by my own experience, they see more than doctors who just start. There is definitely a learning path for the doctors.

I would agree with you that this forum to work it must be patient-centric. And may be you are right that this forum can also work for educative purposes among doctors.

On our side of the ocean, there is definitely a knowledge transfer ongoing between doctors. But I believe -and this is based on my experience in other sectors- fora like this are not the ideal medium for the sort of knowledge transfer we need here. I suppose as long as we are aware of that, there is nothing wrong as such with your experiment .

May I use this opportunity to thank you for all your contributions to this forum. This forum has been like a life line for me for the last year and I am sure for many others. Thank you again,

Best

Leo
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Postby Cece » Thu Jan 13, 2011 10:50 am

drsclafani wrote:Let's give it a chance. I made a parallel thread for patients to discuss. I am happy to enter or lurk if you like

If you would enter into a "for ladies only" thread, then surely you will enter into the patient discussion thread (where you and DrCumming and anyone else are definitely most welcome). :D
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