Sunday, 21 September 2014

MS Day Post-Script

The Research Day has been evolving over the years and this year was the first time that UCL has organised the day. 
There were positives and there were some negatives. 
The UCL group will learn just as QMUL has done each time, we have organised the event.

As ever we look for feedback so that we can learn and adapt and it was clear that we need to change the format.

Many people were new to the event and did not realise that the original idea was to showcase our research, rather than providing information about the MS world in general. 

For some the pitch was too high...going over peoples heads 

For some the pitch was too low, especially for those who have attended past events and have become, or were already, expert MSers.

Many MSer know about MS drugs.
Do they need/want to hear the story again. Do they want to hear the story from us, when there are many information sources out there

The needs and interests of a newly diagnosed MSer verses someone with established MS may be/are different.

People want to hear about stuff that is not in our research portfolio, should we get guest speakers.

Should be try an cater for a "one size fits all" of try do something different.....Plans are underfoot

7 comments:

  1. How could you possibly satisfy everybody? An event like that cannot be aimed at newly diagnosed, they have different needs and I am sure there are other events aimed at that group.
    Repeating over and over : here is a nerve and here is the myelin and the myelin gets damaged and so on... would make the most interested MSer yawn.
    Present the newest research, newest treatments, newest trends in MS research :-)
    J

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    Replies
    1. Do we present the newest research....or our newest research.

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    2. Both... What your are doing fits into some larger context of data others have come up with before, doesn't it? :-)
      J

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  2. Maybe you can split the days between summary and detailed. You can cover the "gist" of your topics on the first day and then give the full deep-dives over the next several days. I also think the information for someone new with MS could be condensed into a 1-2 hour talk that would need only minor tweaks each year.

    Even as an MSer without a medical background, I find the more detailed talks to be far more interesting even if I don't understand everything. We've all heard the general ideas a thousand times, so it's much more interesting to go into new findings supporting the ideas.

    I think this is a great idea though, and thank you for sharing the videos.

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  3. Glad to hear 'plans are afoot'; one size really doesn't fit all with MS.

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  4. It is difficult to please everybody. Maybe you could run parallel sessions? I find this site, and the research day, an invaluable source of information and support. Despite what others may say I find a lot of hope on this blog - it provides a window into the active research community that I would otherwise have no access to. There is no other reputable resource like this available on the internet so many thanks and keep up the good work :)

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  5. Research day is for those MSers who already follow MS research e.g. They follow this blog. I don't need a run through of all the current therapies, or the usual myelin is like the coating on a wire. I'd like to see a session on what may be available next year,, another on what might be available in three years, and a crystal ball gazing session on what might be available in five years. I'd also want a session on why understanding the disease is so difficult to crack given all the technological advances.

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