October 5, 2011

The Power of the Patient: e-Patient Connections Conference 2011: Day 1

Photo Credit: iStockphoto
"Patient is NOT a third-person word." - e-Patient Dave deBronkart

These were the powerful words that resonated throughout my next two day in Philadelphia after the start-up meeting that birthed the draft for the 'Digital Patient Bill of Rights'. When I was warmly invited by Wellsphere and Wego Health to attend this patient-centered health conference there wasn't a moment of hesitation; I just had to be there! I wasn't sure what to expect from my time at the ePatient Connections Conference 2011. I had various thoughts of cold-hearted pretentious business suits floating by in all types of assorted flavors with chest puffing listed as one of their favorite pastimes. Thankfully I was disappointed!
ePatients at e-Patient Connections 2011
(Photo used with permission of e-Patient Connections:
 ©2011 http://epatient2011.com/ Some rights reserved.

I will admit I was wary at first. Questioning whether I had done the right thing; if attending this conference was a step in the right direction for patient advocacy. My mind was plagued with worry about whether I would properly represent the 1.5 million Americans living with lupus; not to mention the estimated 5 million worldwide! Shaking off my doubtful fears I steeled my mind with the whispers of encouragement from countless endeared patients who have grown to be a family of mine and prepared for what the next two days would bring.

Charity Tillemann-Dick
(Photo used with permission of e-Patient Connections:
 ©2011 http://epatient2011.com/ Some rights reserved
Seth Godin was the first speaker at the ePatient Connections Conference. I will never ever forget these impressionable words of his, "You are a platform for leadership; what will you do with it?". His words rang true. I believe it is not enough for us to just be patients; we must be more than that. We must take charge and be leaders; even if it's just for our own health!

I could barely contain myself once Charity Tillemann-Dick; double lung transplant patient graced us with one of my favorite Italian arias after being told she would never sing again. Her emotional journey resonated with me and so many other patients at the conference. The prospect of hope and how finding the silver lining in EVERY cloud becomes imperative to our very survival in life. Charity left the stage after sharing this pearl of wisdom, "We have to stop letting disease divorce us from our dreams!" I couldn't agree more.

I didn't think the conference could get any better....then jaw-dropping commenced after e-Patient Dave and Silja Chouquet performed a spontaneous patient advocacy inspired rap (complete with live beat-boxing!) asking physicians and pharma to 'Let the patients help!' and the day just kept getting better after that.

Silja & e-Patient Dave rapping!
(Photo used with permission of e-Patient Connections:
 ©2011 http://epatient2011.com/ Some rights reserved
Jonathan Richman; former pharma representative spoke up about pharmaceutical companies needing to start offering services that improve patient lives instead of making products. I love that doctor Brian Vartabedian mentioned the dangers of "snake oil salesman" and how physicians should be more engaged with patients to help promote the safety of credible health information found via social media. I can't count how many conversations I've had with fellow patients who inquired about some "miracle lupus cure" or supplement that they found floating on the web! We NEED physicians to engage with us and utilize social media as an additional way to assist patients with better health care.

The day was filled with countless pharma and physicians acknowledging that patients mattered and proclaiming how valuable our input is to the positive growth of the future of health care. Needless to say I forgot to measure just how many inches my mouth dropped after each speaker shared their intellect. One doctor exclaimed that empowered patients were redefining them while another confessed that the fear of intimacy was why most physicians were reluctant to embrace social media.

One of the new health innovations introduced was the phone application introduced by Jeff Kozloff of CareCoach. He demonstrated how patients can improve their physician relationships by audio recording their doctor visits and utilizing the CareCoach phone application to help prepare patients to maximize their visits to their physician. How grand is that? A funky new gadget that I can use as proof when explaining to my physician that her bedside manner needs improvement! However, when using this app make sure to get permission to record first; you won't be of any use to health care reform behind jail bars!

The day came to a conclusion with dinner provided by the lovely folks at HealthCentral who strategically assigned seats so that each dinner table was a clever mixture of patient, physician, and pharma. I was a bit overwhelmed being one of two females surrounded my a smorgasbord of sharp suited businessmen until a very warm gentleman introduced himself and began to inquire about what brought me to the e-Patient Connections Conference. I must warn you though; once prodded I'm an overflowing fount of information especially pertaining to patient advocacy and lupus awareness! The evening was filled with pleasant conversation between myself and three brilliant gentleman who I later learned were astounded to discover that patients often have horrific health care stories. This helped mold my views a bit more positively for pharma and physicians and encourage my beliefs that health care needs to be a three-way street between them and the patient. Mutual respect needs to be attained; input shared with similar goals for achievement laid out in front of us.

I looked forward to day two of the conference after being pleasantly surprised with all day one had to offer.

How about you? What are your thoughts on the relationship between patient, physician, and pharma? What valuable input would you like to share to help shape the future for positive change in the health care system? Please share your thoughts; I'd love to hear from you!

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