October 6, 2011

Knowledge is Power: e-Patient Connections Conference 2011: Day2

As day two of the e-Patient Connections Conference 2011 (ePatCon) unraveled I found a familiar phrase constantly replaying itself in the background of my mind. "Knowledge is Power"...a loaded statement proclaimed to me and countless others every single day by my childhood charter school KIPP.

Now let's take a minute to dissect it. I think most of us would agree that knowledge is most definitely powerful, but aren't there mechanisms that we much first utilize to make it so? Actions being at the forefront. When we take action by sharing what we learn; knowledge will then have power!

If that isn't motivation to pass pertinent information along the grapevine; I don't know what is! Quite amazing that all this pondering took place before 8:30am during breakfast, eh?

Settling into my reserved seat in the Hyatt at the Bellvue ballroom for day two of the e-Patient Connections Conference; I began to prepare myself for a day of learning.


Chris Schroeder, of HealthCentral was the first keynote speaker. He blew my mind away with his very own revelation of patient empowerment! He challenged us by asking, "What is more important than taking control of your health?"...Truly I find none more important. My days are consumed with personal research of my own to rise above my diagnosis of lupus and strive instead of just surviving. Chris continued to exclaim," Where are the pitchforks and torches!? Where is the, "We are mad and aren't going to take it anymore!" in health care? Do you hear that patients? It's a roll call of sorts, a bellow through the loud speaker asking each and everyone of us why we aren't doing MORE to better our health care. After all EVERY ONE is a patient; why is it so hard for pharma, physicians, and patients to all collectively think like one? You can read/watch  Chris's full speech here.

Chris was followed by Harris Rosen, a Hotel owner who was so frustrated with the health industries indifference to his employees that he created his own health care facility! His only iron-clad rule for all employees is absolutely no smoking, but at only $45 a week you get top of the line health care. Let's hear it for health care innovation at it's best!

This launched a heated discussion through the twitter-verse on whether patients truly "get it"? Some individuals felt that patient literacy was a huge problem while others decided they disagreed with Rosen's no smoking policy and deemed it too controlling. As I filtered through the conversation it seemed that a lot of people were leaning towards patient education being the culprit behind our broken health care system which I STRONGLY disagree with. Once this was uttered in the twitter verse a frenzy arose and ePatients began to take the helm with their valuable opinions. Personally, I believe their must be education on all sides of the health care round-table. Patients should be sitting at the helm and pharma and physicians should be gathered with them to share perspectives and work towards the same positive goals that will reform health care for the better.



                                                 Even the audience at ePatCon was engaged; a physician remarked that technology could be utilized for patients to reduce the amount of doctor visits. Ron Gutman of HealthTap took the stage and inquired why doctors weren't on the same page with everyone else and using interactive health as a mechanism to improve their health care. Continuing to say that interactive health would promote transparency, quality, and better doctor relationships for patients. All this rang true as I replayed scenarios from former doctor visits in my mind. Then I pondered on why I never spoke up and said something all those years. It's been a long road for me as a patient; one thing for sure is I will never be content to play the docile patient anymore!

Vladamir Castillo followed after Ron and presented on how engaging the patient should occur on day one and how insights could be used to better the patient experience. Leaving us with the mind-blowing statement, "It's not what we can do at pharma; we should be doing our job with passion and to be there for them [the patient]." Tina Sampath blew me away by quoting Spike Lee,"Do the right thing!" as her response to pharma/physician in health care. I mean here is a pharma rep for Gilead who outright placed real patients front and center in her presentation complete with video footage and even in person right on stage. There were several moments when I proclaimed how impressed I was with them as a pharmaceutical company who showed respect for and valued patient input via the twitter-verse. Truly a ground-breaking occurrence that all other pharma and physicians need take notes of!

Tina's presentation brought the power of a patients' story to light. The oil that will grease the health care systems broken down engine IS the patients' input! The time has come for pharma and physicians to recognize and respect that and find a way to make progress happen. Once the importance of a patients' story began to unfold; ePatients took to the twitter-verse to share their perspective on it all. There was a lot of inquiry into why so many "health community sites" arise instead of already helping to promote the patient-run communities. Why create something that already exists if you can help the progress of one that is in existence already? This often leaves most of us ePatients feeling alienated and ignored in spite of all we do to help our health communities.

Photo Credit: HealthCentral
During lunch I had the pleasure of being interviewed by HealthCentral's Amanda Paige. She asked me what my thoughts were regarding the "Digital Patient Bill of Rights" and how it felt to be a part of it as well as how social media has influenced me as an advocate. The charming Mark S. King also interviewed me for his blog; My Fabulous Disease and inquired about my perspective on blogging and asked how I would describe my illness (Lupus) and relate it to his. (HIV). All of these video clips will be showcased in my next blog post; so stay tuned.


Day 2 at ePatCon came to a conclusion with Brian Loew of Team Inspire and my fellow rheum sister Kelly Young (RaWarrior). Major kudos to Brian for being upfront and mentioning that ALL power was of the patients who became empowered to help their diseases and disabilities while claiming no credit for himself or his phenomenal site. So proud of Kelly for implementing how patient input is imperative to the progression of health care. You can't fake passion! All the patients who were in attendance are proof of this. Each of them have no financial motives or gain from the hard work they put into their patient-centered communities online. They became EMPOWERED because they CARED not only for their health but for the health of others as well! It's time for pharma and physicians to finally get on board with us patients and emphasize the CARE in health care.



What are your thoughts on the input of patients and their stories? Do you find them valuable or not? Do you feel that pharma and physicians are on board for progressive health care? What are your thoughts of the patient being the top stakeholder at the health care round-table? Share your thoughts! I'd love to know.










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!