Friday, September 16, 2011

Sometimes Even #Epatients Need To be Simply Patients

Today I have been watching #med2 (the official hashtag) for Medicine 2011 at Stanford Ca light up my Tweetdeck. (There also appears to be another tag #med20.) There are so many great people there including Lee Ase,  Susannah Fox, Sherry Reynold = @Cascadia , Coleen Young, Jen Dyer = @EndoGoddess  and Bryan Vartabedian = @Doctor_V among so many others and too many to list. Earlier this week was The Mayo Clinic's Transform 2011 Symposium in  Rochester Mn. with another cast of wonderful attendants.  You can see the archive of tweets here: #txfm11 or read/watch more here. One session was dedicated to the Transformation Power of Social Media and talks about us patients as an underused asset. Both conferences included scholorships for Epatients. A number of them are members of the Society of Participatory Medicine. Alas I am/was not at either. I am bumming... And, this leads me into my topic, which is the strange conundrum that  I face as a "patient/Epatient". It is a weird tension between wanting to be out there, having an active voice, and changing the world one bit at a time and sometimes your body, and the reason why you are an Epatient having to take the priority. And, therein lies the conundrum. (It is almost like the tension I had when I was working and managing my health)

This churn in my brain started several weeks ago when Nancy Finn = @nfinn8421 from The Society of Participatory Medicine, made a post about upcoming conferences (for the rest of the year), asking if anyone from the society was going to any of the conferences that the Journal of Participatory Medicine would like their contributions.

Upcoming conferences:
September 11-13, Rochester MN: Mayo Clinic Center for Innovation Mayo Clinic Transform 2011 Symposium
September 16-18, Stanford Ca: Medicine 2.0 Congress
September 20, Philadelphia, PA: e-Patient Connections 2011
September 20-22, San Francisco, CA: National Medical Home Summit West (new to list)
September 24-29, Nijmegen, Netherlands: E-Patients Boot Camp
September 25-27, San Francisco, CA Health 2.0 Fall Conference
October 22-26, Washington, DC: AMIA 2011 Annual Symposium
October 27-28, Berlin, Germany: Health 2.0 Europe 2011
December 5-7, National Harbor, Washington DC: mHealth Summit

This includes the preeminent Health 2.0 conference, put on by Matthew Holt = @boltboy and Indu Subaiya = @bluetopaz at the end of this month (follow related tweets @health2con)which I have been dying to go to for years, but haven't been able to do because of my health constraints ... mostly due to surgery timing, which seems to fall in Fall of nearly every year (for a host of reasons...mostly tactical). boo :(

And, that is the crux of the tension I have between being "out there" and needing to tend to the "home fires".  As I move through this world of healthcare with a developing voice and want to be apart of the healthcare solution I find myself wrestling with wanting to participate in the larger dialogue and my body demanding attention in whatever form it takes that day, or stretch of time; be it too exhausted, recovering from surgery, doing physical therapy, going to appointments, which never seem to end, or whatever combo. And, that is a kicker.

I was so eager, "chomping at the bit eager," to apply for a scholorship for the Stanford Medicine 2011 event, then I realized that I couldn't in good conscience for myself and healing body and that was tough (just finished surgery and heading into another). I was mad for a few days, and then I saw Nancy's post, and I was more mad....then I got through it.

Ultimately I have to remember that the reason why I am apart of the discussion is because of my health issues, and frankly
 there is little I can do because yes, the body wins at times. And, apparently it does so for others. Look at @Marcela's post earlier today. The wonder of it all is that I can still participate in some fashion even if it is by reading my Twitter Stream, reading and commenting on posts, being playful with a twitter friend, even writing a blog post, and when I can more actively participate go to conferences, like the one I did in May for Mobile Health 2011. Also, I can encourage other #Epatients as I can, like those who received scholarships to the Medicine 2.0 Congress including Hugo and Marcela who I know are members of The Society of Participatory Medicine (I am sure there are let me know) and anyone else who has a vested interest in making our healthcare world a better place. Thank you Twitter friends who keep us up-to-date on health topics like today
 #med2 So, please contribute your experiences and let's make a difference by getting involved in our own healthcare to start and branch out from there. 


I would love to hear comments, especially from patients who may struggle with the same issue.

5 comments:

Marcela said...

Thanks for mentioning me. I wrote an essay about my health situation which I might submit to JOPM but it's so personal, esp since I'm still in the middle of the situation. Definitely wishing I was having fun at Stanford instead.

Alex said...

your welcome....don't be deterred about it being personal that is how we connect and elevate the situation to make a difference.

acowatch said...

Alex, thoughtful post. Yes, it takes a village to stay centered (at least for mois). I get the struggle, but wave my freak flag in support of your journey.

Like you for the first year or so, my attendance at conferences was via tweets from conference attendees or hashtags. The sense of presence I got from following and engaging in the conversations were real and uplifting.

Today I routinely get press invites to major events because of my participation in conference social media and find another layer of satisfaction in the 'face time; showing up affords.

Take care of the temple of your body warrior and stay engaged. I look forward to meeting you in person one day.

Journey on.

A foot solder in the cause!

acowatch said...

Alex, thoughtful post. Yes, it takes a village to stay centered (at least for mois). I get the struggle, but wave my freak flag in support of your journey.

Like you for the first year or so, my attendance at conferences was via tweets from conference attendees or hashtags. The sense of presence I got from following and engaging in the conversations were real and uplifting.

Today I routinely get press invites to major events because of my participation in conference social media and find another layer of satisfaction in the 'face time; showing up affords.

Take care of the temple of your body warrior and stay engaged. I look forward to meeting you in person one day.

Journey on.

A foot solder in the cause!

Gregg aka @2healthguru

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