Wednesday, 8 April 2015

How democratic is the dissemination of knowledge?

CME portals for HCPs designed to keep MSers out. Why? #MSResearch #MSBlog

"I am personally involved in several different CME (continuing medical education) platforms to help disseminate MS-related knowledge to healthcare professionals (HCPs). The frustrating thing about most of these web portals is that HCP education is done via a firewall and requires people to register and state that they are who they say they are. One of the portals that I contribute to is the Global MS Academy; the platform is very innovative and interactive. Being interactive helps the learner remember and engage with the information being presented. It is a great pity that MSers can't access this and other similar portals. In an era when knowledge is being rapidly democratised and access to knowledge is virtually free is this model sustainable? I suspect MSers want access to the same knowledge and information your neurologist and other MS healthcare professionals have access to. To make sure my assumption is correct I have opened a quick two-question survey. If you have time please complete it and have your say."




CoI: multiple

18 comments:

  1. Prof G what other web portals would you recommend?

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    1. Re: "Prof G what other web portals would you recommend?"

      I have created a new page with links to some of these. It will expand with time.

      http://multiple-sclerosis-research.blogspot.com/p/web-resources.html

      Delete
  2. If you want to access these portals as a MSers you can always use a pseudonym and pretend you are a neurologist.

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    1. Re: "If you want to access these portals as a MSers you can always use a pseudonym and pretend you are a neurologist."

      Is suppose you can try, but I suspect they have some vetting system in place to vet your credentials.

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  3. The survey form won't display for me - can the bug fixers please fix it.

    I'm guessing that one question will be about whether as an MSer I want access - well that's a no-brainer! Of course I do.

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  4. One problem is that a little knowledge can be a potentiallly dangerous thing. For example, from reading other blogs, some people with MS are already taking massive doses of biotin before the announcement of MedDay's results. Some information does require medical/scientific interpretation.

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    1. Thanks for making this point....There you go NeuroDocG told you so. Maybe you should get that post ready

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    2. Re some people already getting stuck into the Biotin - given the complete dearth of any treatments for Progressive MS can you really blame them? The only stuff around for progressive MSers is that which is used for "symptom management" - somewhat of a sad joke really, as all of those meds also have their own side effects to greater or lesser degrees, and are not necessarily all that good at "managing symptoms". And even at existing retail prices, biotin is financially far more within reach for MSers than "health tourism" HSCT, which at the moment seems to be the only other possible option.

      Biotin as a treatment - if it works - will still be several years away. If MSers using biotin start to see some benefits, I suspect a grass roots movement similar to the Low Dose Naltrexone one will start to emerge. As many of the people who will try biotin will be progressive MSers, they won't be on any DMTs, so attributing improvements or stability to biotin may be a bit clearer than with LDN, as many MSers taking LDN are also on DMTs for RRMS.

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    3. Anon 1:51pm - to start taking massive doses of biotin - which can then no longer be considered a "vitamin" but rather a medicine/drug - without medical supervision and just _weeks_ away from when MedDay are going to announce their results makes absolutely no sense at all. Madness. The whole point of vigorous scientific trials is to verify that a medicine a) works and b) won't cause more harm than good. Why stuff yourself full of something that is not proven rather than waiting a couple of weeks until there is some solid evidence? I have PPMS and am as desperate as anyone else for a cure, but I am not about to risk making things worse rather than wait just a couple of weeks.

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    4. Anon 1.51pm back again
      Anon 5.53pm - I agree with you. I was simply noting that with no effective treatments yet for progressive MS it is understandable if some MSers look at trying it for themselves without waiting for further evidence on potential efficacy or any information on safe upper limits for consumption of biotin (none of the official "authorities" have nominated a safe upper limit, all stating that there is insufficient data available for them to do so).
      No paywall - you can read the full report on the initial study here:
      http://www.msard-journal.com/article/S2211-0348(15)00006-1/fulltext

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    5. Anon 6.39am - I can see what you're saying, and I know the study you refer to. But I personally, as a person with PPMS who also feels the desperation for a remedy acutely, do not think it is in the least bit sensible to pill-pop biotin to the hefty degree that some people are doing when the results of the placebo controlled, double blind study are due so soon. This pilot study is very exciting but It was not placebo controlled and only involved 23 patients. I don't think the absence of a safe upper limit is relevant in as much as this data is absent for many nutrients/substances/vitamins and this absence indicates nothing about safety. I can understand the translation of desperation into a gung ho "I'm done for anyway" approach. But not when more solid results - and I hope with all my heart that they are positive - are just around the corner!

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    6. Anon 5.53pm an 10.25am - I did say that I agreed with you, and I too " hope with all my heart" that the results are positive - maybe a tiny light at the end of the tunnel for progressive MS, instead of someone just ordering more tunnel.........

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  5. You don't get interpretation on this blog unless you gdt prof G who rarely answers questions. You just get politicians in white macs.

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    1. Firemen one minute and are you thinking the Monster Raving Loony Party the next:-)

      Of course you get interpretation.
      http://multiple-sclerosis-research.blogspot.com/2012/04/mushroom-model-dont-believe-every-thing.html

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    2. Just reading the blog will show just how erroneous your statement is.

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  6. Projects in Knowledge is one I used to read a lot. I dont' think there was any risk of anyone getting information they couldn't handle or could possibly misuse. It was a good way to understand how other neurologists talk and think about treating MS. Nothing shocking or eye opening though for anyone who reads this blog.

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  7. Of course, if you give us all general access you'll then have to deal with the more annoying annonymice from this blog. (Though I'd more characterize their reaction as panicked frustration compounded by realizing neurologists are treating their patients like children.)

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