Tuesday, 3 October 2017

#ClinicSpeak: Will MS Self-Rx become a reality?

Will I have enough hours in my day to curate the MS Tube map? #ClinicSpeak

Summary: A tentative start to curate the #ClinicSpeak posts into an MS self-management website.

I have been promising to launch a curation tool to help pwMS self-manage (self-Rx) their MS. It has been on my ToDo list for over 2-years. It comes up each year in my appraisal and gets moved to next year's ToDo list. My next appraisal is in a few week's time.

The idea is to curate all the #ClinicSpeak posts from the blog onto an easy to navigate website that can be read as you would a book and to hyperlink it to the MS Tube map with each stop on the line being linked to a particular web page or online resource. If I start now and do 2 or 3 links per day it will be completed within a few months (or years). Before proceeding can you please let me know your thoughts on this initiative? It is a very big project and I don't want to spend months doing it unless it will be used. As the map builds the stops will turn blue indicating that the stop is now linked to a completed web page.


CoI: multiple

12 comments:

  1. Morning ProfG That's some on your ToDoList with the tube map containing so much!
    I know from accessing the Blog daily that you will receive some comprehensive, astute responses to this post, but I wish to flag up a couple of things:
    I haven't a clue what some of the map contents are, particularly on the symptomatic section. With this being aimed at PwMS, perhaps it would be an idea to use laymen terms, with clarification of the medical terminology in the 'chapter'
    Some of us are graph or map phobics - it took overriding my 'Oh S**t' reaction when I first saw the map to actually engage with it at all, let alone meaningfully. The book concept is, I'd hope, universally accessible, so I'm very much in support of that approach, with the map incorporated.
    The self management site is an astoundingly good idea and I wish you the very best in completing it. When you breathe the sigh of relief 'Phew: Done!' there'll then be the following issues: how to ensure as wide a PwMS audience as possible and how/when to update the info.

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    1. Thanks. Yes, the map will change and evolve. I will change it to a fold-out map soon and enlarge the sections. I will also group symptoms to make it easier to navigate The biggest task, however, is searching, cutting-pasting, editing and improving old blog content.

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  2. I suppose if I were newly diagnosed and came to this map, I might feel overwhelmed. MS is overwhelming in itself, and then feeling that I should now know about all these different aspects. Today, years after diagnosis, I find it both interesting and useful. But to newcomers, I think it would need something like an easy navigation tool and maybe something like a priorization of topics to look at. The thing probably is to try and imagine different types of users and try and have a navigational tool or structure according to the questions they may want have answered by the map.

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  3. You're a clever guy Prof G, but I wonder if your time is well spent. I dread to think how many hours you have spent perfecting the tube map or contributing to this blog. You think that ebv might be the cause of MS. Please prove it and come up with a deliverable strategy for preventing MS for future generations. In time the blog will close down and the tube map will become wrapping for fish and chips. The researcher who proves the cause and identifies a prevention strategy will be the one who is remembered.

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  4. Hi Prof G. MS newbie here again - first of all, I am very grateful for your blog (and the time you take to keep it active). Your blog keeps us up to date and brings us closer to sometimes-hard-to-digest journal papers and unlike a lot of MS "resources", you never sounded like a sensationalist or alarmist which I appreciate greatly.

    That said, the blog itself is great for HCPs and/or pwMS deep into the journey to catch up & discuss the latest. However, when I first found out about the blog I struggled to find MS 101 type of information in a coherent way - labeling with # & giving it titles is something I found out the other day :) Just yesterday I easily spent 1hr on your blog reading on NEDA #ClinicSpeak (thanks for the reply btw!) trying to make sense of numerous blog posts with more questions poping up as I read. I believe that you expanding on the microsite would be an invaluable information source for pwMS (especially newbies) and those interested in playing an active role in their MS management.

    If I can help your efforts to expand on the microsite I will be happy to help build such resource for all of us.

    Thank you!





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    Replies
    1. Re: "...the microsite."

      This will be a static site, i.e. just curated information. News, research highlights and Q&A is what the blog is for.

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    2. Looking forward to it!

      "This micro-site to help people with multiple sclerosis (pwMS) decide.." - from your site :D

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  5. I must confess that I struggle to get my head around this. Self management and self assessment is laudable but, likeFi, have to beat down the "Oh, s**t" reaction and, realising how incredibly fickle the online attention span is, really wonder if its worth the effort.

    I remember that "getting ready for appraisal" state of mind and wonder if it can lead one astray.

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    1. I completely retract this comment of mine, having read Annonie, and realised that I am not seeing what I am supposed to see. My Tube Map is not clickable and the ClinicSpeak micro site does not hyperlink to anywhere! Sierra MacOS & Chrome

      Gavin - I do apologise

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  6. This is a great idea! I would certainly use the site. It would be great to see it translated into other languages.

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  7. I think this is a brilliant idea! I love the colour coded tube map, it will be much easier to navigate than the blog for sure. Some lines are long with many stops, coinciding with subjects covered well elsewhere eg the excellent MS Trust website A to Z of MS. Others less so, especially the Terminal Line (all the more important to include). You certainly have your work cut out ProfG! Do you have people to help with legwork ie searching and collating posts to stops ready for you to edit? And proof reading? You write very well btw, proof reader won't have much to do! A couple of lines lend themselves to guest editor stops eg Wellness and Therapist?
    I enjoyed reading the first two stops and even learned a couple of new things after all these MS years ;-)
    Happy to assist with this project in any small way.

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