September 22, 2011

Say WHAT?!

This past Monday, I had quite a thrill when I got to work with 19 other health activists from many parts of the country, right here in my beloved Philly.  Imagine a room with 20 passionate people: a few were more soft-spoken than me, prefering to quiety listen and gather their thoughts which they then shape into powerful messages; a few actually made me look demure (if you can imagine that); most are patients but the group also includes caregivers, professional patient advocates, writers, and community leaders; the activists range in age from me to our senior statesman in his early 60s.  We came together (thanks to sponsors & supporters the Digital Health Coalition, Klick Pharma, ImageThink, Health Central, The, and WEGO Health) with the idea of an ePatient Bill of Rights in mind.

Pretty explosive set-up, if you ask me.  Could easily have become a Hiroshima situation.  However, these activists were not only passionate, but extremely bright, insightful, well-versed in their particular area, and oriented toward the good of patients everywhere.  What could have been an atomic disaster was more like the best fireworks display I could imagine.

And a display that I'll be posting about soon, I swear.  I'm going to share with you the magic sign that represents the outcome of our session, major themes discussed, questions & concerns I want to hear your thoughts on, and where this is all going from here...just as soon as I can possibly get the post written.  But as I had to take time from work at a critical point in my current engagement to attend, I'm even MORE backed up!  I'm also trying to plan my office's Disability Mentoring Day as part of the National Disability Employment Awareness Month in October (yet another amazing post topic coming your way).  So, to do my post on the Coalition justice, I just ask that you bear with me a few more days so I can get it together.

But not to leave you high and dry - here is a picture from the session.  As you can see, I am making some (no doubt, mindblowing) point to the group...and talking with my hands.  This is apparently a ubiquitous "Jen" pose.  I think I remember what I was saying at the time...but would love to hear your guesses!  So let's have a little game, shall we!

Take a look at the picture below, and leave a comment with your guess at what I'm saying!  (Funny or serious, just not crude or offensive please.)  You have one week (cut off will be midnight on 9/29), at which point I'll pick the best and send you a small prize!!  You can also leave comments voting for responses you like best:)

Ready, get set, GUESS!

Photo used with permission of Klick Pharma: ©2011, All rights reserved.


  1. It was indeed a fascinating "meeting of cyber minds," Jennifer, and I'm so happy to have had the pleasure of sitting beside you and comparing notes. The biggest takeaway for me was how disease-centered my thinking has been -- "oh, HIV/AIDS is so unique and unlike other diseases" -- rather than hearing from people like you and seeing that the vast majority of our experience is quite similar!

    Mark S. King

  2. Hi Jennifer,

    This sounds like a really interesting conference! I look forward to hearing more about it and the epatient Bill of Rights you mentioned.

    Now, as far as your picture goes......I think you had some children in teh audience and were telling the story of the "eency, weency spider" who "goes up the water spout"!!

    ;) Sorry, I couldn't help myself.

  3. "Good, Good, now we can FINALLY take over the world" *please insert shifty eyes here* :)

  4. Ms Yoda.. I know you think you know all BUT, here's the thing, what about us little one's with no taber... we do not have ability to get the drugs to help us become stronger & wiser.

    That's my guess and i'm sticking to it!

  5. Here is the church, this is the steeple. Open the doors and see all the busy people! Aw, look! They're all wiggling and happy!

  6. I see I have to be the serious on here. You're saying people have to work together...united we stand!

  7. Mark brings up a great point! No matter what our illness; we all come together fighting for the same goal of improving the communication barriers in healthcare.

    I won't join the "Guess what Jen's saying" contest since I was at this meeting :)
    Good luck to the rest!

  8. Thanks everyone! I love the feedback:)

    Mark & Tiffany - welcome to my blog!

    My brother (The Dorfist) knows me too well - I WISH that's what I was saying! I might have to remember it for the next conference...

    Cohort-in-awareness Bridget also knows me too well - don't give away my plans!! ;)

    Jen Daisybee, Tammy, and Annie - your guesses are all so different! Each made me smile:)

    So I declare everyone who commented gets a UII prize! (I warn you, it's just a token of my appreciation.) Please email me at with your address so I can send you your "prize" (except Jon and Bridget, I know where to find you^-^).

    To the best of my (albeit, faulty) memory, I think I was saying something about how we all want to make things better for future patients and knock down hurdles for each other (though honestly, any of the guesses here are fair game).

    (PS this is Jenny, for some reason my computer doesn't let me comment on Blogger as myself!!)


I'm excited you're here - and can't wait to read your comment!

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