Sunday, 25 November 2012

Research Day Initiative: Question Time

Question Time is a topical BBC television programme that debates current issues in the United Kingdom, based on Any Questions? The show typically features politicians from at least the three major political parties as well as other public figures who answer pre-selected questions put to them by a carefully selected audience. Question Time is currently presented by David Dimbleby.



We intend to have a "Question Time" as part of our Research Day, where you the Blog Readers will supply the questions to a selected panelists from UCLP. It will be filmed and posted on YouTube, so for those of you who can't be there here is your opportunity to take part.

We need a chair, who can spot the mushroom food from the Panelists.

Could this be you VV as arch rival of the establishment here is your opportunity to take part? Do you travel? Are  you out of the closet?You would need to come to London and not be intimidated by Neuros and Scientists?
Contact Prof G!

Please use the survey below to set questions for the panelists!


11 comments:

  1. Quetion Time may be the best thing on telly, along with, in my opinion, The Jerry Springer Show. Both are great entertainment, the former being relevant too.

    I hope your MS Question Time has a range of guest voices representing all sides of the debate. If it's just to be al pro-DMT and anti CCSVI then that sucks (even though the latter has wasted to much time and energy in the world of MS research).

    What we need is a debate like the one they had last night when young socialist Owen Jones beat ten shades of crap out of Tory villain Ian Duncan Smith, chatising his stance on welfare spending and the attack on disabled people in British society. The audience was electric, shouting out and yelling at the Tory scum party. Great television.

    This can be a truly great debate MouseDoc. You must allow dissent. You must let MSers ask you questions that provoke and disturb. You must be honest about the state of MS healthcare. Only then will it be worth holding this event.

    It is a brilliant idea. Well done for agreeing to hold it. Your special day has become something to look forward to in the New Year, especially after the lack of cheer the world of MS research delivered in 2012.

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  2. It is not my idea but the meeting organisers I am just a mouth piece (don't need any comments on this:-), but as you say the key is not to have a monoculture of views, which is not always easy unless we bring in new people who are prepared to speak in public against your colleagues. However this will boil down to you (the readers) getting good questions.

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  3. http://vimeo.com/26996943 you grow weed too !

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    1. Not me but I know a man that does...G Guy of GW Pharama

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  4. apologies for deletion - really must check my grammar more thoroughly.

    I have a question for whoever wrote the invitation:
    If i were the sort to get offended at the drop of a hat the bracketed description of neuros and scientists could be seen as quite offensive. It seems to imply that MS patients aren't accustomed to thinking or being around people who think.

    What do you think people who can't get out as much as they'd like actually do all day?

    We have the time to think about things.

    Do medical professionals have a similar time or for that matter inclination to think about the people with the condition that their chosen job it is to help?
    question suggestions:
    Who designs studies and how?
    Are the potential outcomes discussed with the people they'll hopefully eventually be benefitting?

    How much of an influence do the funders of a trial have over proceedings?

    What outcomes were measured for Avonex, Rebif, Copaxone & Betaseron?

    What do you believe we might find if such rigour as seen in the trials of existing disease modifying drugs were applied to CCSVI treatment... or LDN... or intensive physiotherapy?

    how might we build on the existing trial data to construct meaningful trials of future treatments?

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  5. I am sure when Prof G wrote this that he was directing this to VV and not the general readership. No offence intended.

    We know that there are some very good thinkers on the Blog readership.

    This is the problem at words, you can not see the context. Likewise it depends on your sensitivity, I once went ballistic when comments were directed to one of my colleagues, but they (being German) did not see or take the insult.

    "Who designs studies and how?"
    This is G's domain. For DMT it is now prescriptive and follows other positive studies with add on bit bepending on the mechanism of action and side effects of the drug. If it is a company sponsored trial they have as steering group, but the regulators will say what they want to see and this will influence trial design.

    Are the outcomes discussed with people.
    Each trial has to be consented, and MSer-based outcomes are taking an increasing important part of the outcome but neuros and the regulators drive what outcomes are collected. When I take my car to be serviced I don't tell the mechanic how to do the service but they will listen to the cars problems because it helps them do a better job.

    How much influence do funders have.

    They have quite a bit of say because they are paying for it, so things may be cut from the protocol because of funding limitations. Sometimes the trial design will have commercial interest e.g Alemtuzumab against interferons if they had gone alemtuzumab verses tysabri the outcome would be very different Charities tend to cut budgets and so you then may have to adapt the trial to fit a budget. again this is G's domain.

    What outcomes were measured.....They are published there are clinical and MRI but there have been alot of trisls with these drugs notabably post-marketing.

    What do you believe.....For CCSVI I hope we will get such rigour. At the moment my expectation if you want my honest opinion, is I think the original rational has been exposed as being inconsistent and that there will be a big placebo effect which will mask seeing any benefit. This is what history has shown me over and over again, with many popularist treatments (you know what I mean ad any way I describe it you can turn it round on some neuros somewhere in the world, but there are unsucrupulous people who aim is to make money from this). I think a negative trial because they do not know what they are doing is unlikely as there has been so much anecdote it should be easy to show a positive result if there is to be one.

    However, I will wait and see and am happy to be proved wrong and have been thinking how I could bring this into my world view. It does not really impinge on what I do at the moment either way. Was reading of oxygen studies in disease today.

    If the positive effects occur as are reported to do occur then I will be happy if venoplasty has a positive effect, on the whole or a subset of people. I saw a MSer today who was convinced of the benefit and that is good. I see no reason why they would want to lie about it. So when I see what the trials show I will have to accommodate the results into my world view.




    Are the potential outcomes discussed with the people they'll hopefully eventually be benefitting?

    How much of an influence do the funders of a trial have over proceedings?

    What outcomes were measured for Avonex, Rebif, Copaxone & Betaseron?

    What do you believe we might find if such rigour as seen in the trials of existing disease modifying drugs were applied to CCSVI treatment... or LDN... or intensive physiotherapy?

    how might we build on the existing trial data to construct meaningful trials of future treatments?

    There is evidenece for physiotherapy being beneficial for sympto modification but as an ultimate DMT I await to see results and logic.

    We need responsive trial design including meaningful outcome measure to the MSer.



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  6. thank you for responding, good of you to take the time and be so thorough.

    I'm glad to hear that patient views are increasingly being taken into account when designing/discussing trials but I have an issue with the car servicing analogy.

    Sure, neurologists can have an input into getting a body to work as well as can be but could it be useful to give physios who could be seen as closer to mechanics than neuros (to stick with your garage anology?) more of a role in patient care?

    The patient themselves still know more about how they feel than any number of professionals. At the end of the day isn't the experience of all our lives measured by how we feel it?

    like I say, I'm glad to hear the patient's voice isn't being ignored nearly as much as when i first talked to a neuro nearly two decades ago but perhaps it could be listened to a little more?

    Why, down here on the ground does it feel like there's been little other progress over the past fifth of a century?

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  7. I was talking about study (trial) design is this down to Neuros or MSers. At present it is neuros.
    I think we are not thinking of quite the same thing.

    How you feel is important and that is why questionaires are important in trial design. These questionaires are designed by people talking to neuros talking to MSers

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