In what I can only assume riding a tornado through a hurricane must feel like, summer camp at Club MedX has officially come and gone. As someone who has spent a considerable amount of time rock-climbing, riding in mountains, and skiing I can honestly say this surreal experience ranks right up there as one of the most extreme sports I’ve ever done. The emotional and physical highs and lows were just as intense as my fellow ePatients passion for life despite some serious illnesses. Unfortunately for you the reader, I currently don’t have the literary skills necessary in order to explain the amount of passion, experience, knowledge, kindness, curiosity, and laughter Club MedX offers to its guests. All I can say is WOW and this is my best attempt!

P.S. This post is by no means meant to be an all encompassing rehash or summary of MedX. Part of me is still processing this surreal experience and the other part of me is not sure yet of everything I’ve learned. As an ePatient scholar, I am required to create a deliverable in order to earn my keep but hopefully this post will be so much more than just “homework” to you the reader. I would have produced this “deliverable” regardless of if it were required of me or not. As always, please feel free to ask questions, comment, or challenge me on any of my thoughts and conclusions. The only way I can grow as a person, ePatient, and advocate is by being pushed to my limits and then some, which is exactly what this trip and Medx did to me.

Thursday, September 26th 2013-

The MedX adventure started with a relaxed, casual dinner on Thursday evening at 6pm. I had arrived in Palo Alto around 11am so I was able to spend some time roaming downtown while partaking in some local eats. This gave me the opportunity to stretch out my airplane aches and pains so I could keep my headache/neck pain to a dull roar that night. Along with being a chance of a lifetime experience, this was the first extended vacation I’ve had in a long time so I felt I was entitled to some Palo Alto vegan doughnuts and one tasty certified organic, Kobe cheeseburger!

Vegan

Thanks to the hard work of the ePatient Advisory Board, the dinner could not have gone better! Instead of being in a room full of strangers it felt more like a large get together of long-time friends and family. There was very little to almost no meeting someone for the first time jitters. The immediate bonding was incredible. As it turns out, there was a reason we all bonded so quickly, as ePatients and people we rock! Not only do we rock, we proved it on Friday.

Thank you to everyone that was involved in putting this dinner together! All the smiles, laughter, and new friendships that began that night can directly be attributed to your willingness to work hard for the benefit of others. Please know your hard work and passion was incredibly appreciated and I hope to match that passion in my own advocacy work as my way of paying it forward!!!

IMG_0891

 

 

Friday, September 27th 2013 – “It’s ok not to be ok” – ‪@chroniccurve

MedX2

 

When I awoke at “way to early am” Friday it was because of a bad combination of neck pain and a headache. For those of you keeping score at home, I was ringing the pain scale at a solid 6 (I should also note here that for the previous 3 Mondays I had undergone spinal epidurals for said neck pain and headache). Fortunately for me though, the excitement of MedX was more interesting to me than my pain so I left the hotel room with inquisitiveness in my head and happiness in my heart. I was ready, willing, and mostly able to absorb and steal all the knowledge and experience I possibly could.

Club MedX opened with the declaration that this was an academic conference for everyone, with emphasis on everyone.  Besides ePatients, there were doctors, lawyers, engineers, advocates, entrepreneurs, teachers, professors, and other industry players throughout the world. From what I understand, there were roughly 400 people physically at Stanford for MedX but thanks to social media, we were able to reach millions by the end of Friday alone. Like I mentioned earlier, we ROCK!

The keynote presentation this day, entitled “The evolving role of the engaged patientwas from an ePatient and doctor who reside in the United Kingdom. Michael Seres, the ePatient, was diagnosed with Chromes disease. Mr. Seres has undergone 20 different surgeries for this painful disease, which included having a total intestinal replacement. Marion O’Connor, the doctor, is the Lead Specialist Dietitian, Oxford University Hospitals, NHS Trust. These 2 meet because Dr. O’Connor found Michael’s blog who currently has some 75,000 followers. Dr. O’Connor and Michael Seres have a very dynamic and engaging relationship that made this presentation one of the more interesting presentations of the conference I thought.

Since I’m still processing the conference, I’m only able to give you the highlights of what they talked about right now. Michael Seres spoke a lot about how nothing can prepare a patient for their journey through medicine but he is a strong believer that patient-to-patient communication is vital for care! He believes that the balance of power is switching towards the patient now thanks to things like social media and Dr. Google.

Dr. O’Connor was impressed with the accuracy of the information on Michael’s blog. Basic technologies are improving patient outcomes she believes (side note-I was very impressed that she choose the word outcome versus some other word. For me, outcome describes the total patient experience, which is not always remembered in today’s fast food approach to medicine). The most useful patient-to-patient information, she stressed, is when we remember to be ourselves. By being me instead of performing me when communicating online, Dr. O’Connor believes that patient compliance improves, patients become more engaged in their own care, and are better able to communicate valuable information to doctors and other patients. Social media (technology) has become a great equalizer, someone somewhere has the experience or expertise needed in order to help, and it’s just a matter of finding him or her.

The presentations that followed were interesting but were also somewhat depressing in an odd way. There was one slide with the title of “Patient Centered Research Groups” that was accepted as a great idea by the audience but I wondered why isn’t this idea the “norm” for our current healthcare system. Shouldn’t the conversation have been how to get MORE patients involved in research groups and not how to get patients into research groups??? Another slide pointed out the need for “creating a zone of openness to increase patient-centered care”, why isn’t this common practice right now. It seems to me that we are losing to many patients because the standard or “norm” has not changed rapidly enough in order to match today’s technology and academic ideas.

Confession time, I am a twitter newbie and fairly inexperienced as far as that social media goes. I chose to use twitter instead of Facebook (much more experienced and comfortable with my Facebook skills) in the hopes of improving on my tweeting skills. As I’m now realizing, I’m pretty good at condensing information to 140 characters but not great at directly attributing quotes to ePatients. Since the ePatient quotes and presentations were the most moving and inspirational part of MedX for me, I sincerely apologize for not always giving credit where credit was due.

As an ePatient myself, I don’t care if someone claims credit for something I said if it helps a fellow patient get better care/comfort or helps change the system for the better. With that in mind, the following are direct quotes from fellow ePatients on that Friday that either brought tears to my eyes or greater motivation to my heart (I can’t thank my fellow ePatients enough for telling their stories, sharing your thoughts, and for having the courage to get on that stage during the conference. Please know you changed my experience and life for the better!)

“Its ok to have an opinion” As patients we need to remember that more.

“Its ok not to be ok” – ‪@chroniccurve

“Validation – Important to know you are not alone. Especially when you are 1 in billions” @chroniccurve

“Labs don’t always reflect our bodies”

“You know your body” – should always be the starting point for health care.

“Easier than ever to make a direct/positive impact on a patients quality of life.”

“Find mentors”

“Patients can now bring in/engage other new patients.”

Saturday, September 28th 2013- “Failing is good. Failing is needed in order for great things to happen.”

Pool Sat AM

 

Once again I woke up at “way to early am” thanks to neck and headache pain. For those of you that are keeping score at home I was now at a 7 on the pain scale and would be an 8 by the time the cocktail party ended that night. Now the one good thing about getting up so early is that it gave me a chance to sit by the pool for a moment and basically meditate on Medx so far. This allowed me to regain my fighting strength from the grips of pain. I was once again still more interested in what the day had in store versus my own pain. Believe me when I say the day did not disappoint!!!

Remember how earlier in this post I was bragging about how much we ePatients rocked? Well, Saturday began with statistical proof of just how cool we are. According to Simplur, Medx 2012 produced roughly 9,000 tweets and reached 1 million people for the entire conference. On day one of Medx 2013, we produced 9,800 tweets, had 2.78 million unique individuals reached, and had 26.3 million social media impressions for Friday alone. #Medx was trending number 1 on twitter for Friday too. I’m still in shock and honored to think that I got to play a small role in reaching that many people that day. WOW!

Hearing those numbers and what we had accomplished on day 1 was the perfect beginning to Saturday considering our keynote speaker was Jack Andraka. Jack is a Maryland high school student who, at age 15, created a paper sensor that detects pancreatic, ovarian, and lung cancer in 5 minutes and costs as little as 3 cents. What have you done lately???

Jack A on Sat

 

Now, besides being an absolutely entertaining and engaging public speaker, Jack has an intellectual curiosity that most scientists probably won’t develop in their entire lifetime. His curiosity into medicine got started because someone he cares for got sick and he needed an outlet. As is common for all ePatients, he turned to Dr. Google and Wikipedia for more information and help. In what can probably be attributed to luck, he was able to pull up information that answered his initial question but that created more questions in this teenager’s head. He became intrigued by the knowledge that was accessible, which further drove his curiosity. At this point his parents knew they had a special kid and were willing to open their checkbooks so Jack could start performing initial experiments. These experiments led to more knowledge that finally created the paper sensors that will save so many lives and money for patients. Once again WOW is the only word I can think of to describe this accomplishment and Jack as an individual!

Not only is Jack creating technology that will save lives he is a strong advocate for more open, transparent, and free information. The heart of science is curiosity but without clean information available to all at no cost, both science and peoples curiosity suffer. Things like pay walls and expensive subscriptions create knowledge classes were only the select privileged few get access to quality knowledge. New advances in medicine are not necessarily going to come from places like Stanford or Oxford University, they will come from individual curiosity like the kind Jack Andrake showed when he began his quest to change the world.

Emily CF

After hearing the ePatients stories on Friday, I knew I did not want to miss a moment of their stories on Saturday. However, my pain was bad enough at this point that I had to make a choice, either continue to live tweet the ePatients stories but not really hear them or I could write about their presentations later but really hear and enjoy the presentations in the moment. It might seem selfish to my tweeter followers but I chose the latter and I do not regret it for a second! By closing my laptop I was able to hear what I think was the quote of the entire conference from Emily Kramer Golinkoff (@emilykg1), “lets change the goal from happily ever after to we are a force when we work together”. I’m still thinking about her words a week later. I would have also missed Terri Wingham’s (@terriwingham) incredible story had I not closed my laptop. Terri spoke my 2 new favorite words “dream audaciously”. By closing my laptop I was also able to witness my fellow arthritis warrior Nikki Estanol (@chronicchill) infectious smile that fueled my desire to experience more instead of giving in to my pain. *As soon as I find video links to the presentations believe me I will be posting them very quickly!

Sunday, September 29th 2013- The “bittersweet last day” of camp

I don’t remember much about this day because of the pain. Pool meditation and quiet time was not helping like it had the day before. At this point I was running on adrenaline and my absolute desire to see Britt’s (@Hurtblogger) presentation. Britt, a fellow arthritis warrior and my Medx drug dealer, was presenting after lunch and it was not up for negotiation, I was going to be there to hear her speak regardless of my pain level!

Although it is clear to me know, I had long since “hit the wall” and should have gone to the “Wellness Room” in order to help myself. A combination of stubbornness, stupidity, pride, and having a greater interest in others versus myself kept me from doing the right thing. I was dizzy, foggy, and having a hard time getting words out. To give you some idea of my mental state at one point I told Melissa on Sunday “I’m a photography!” This was exactly the opposite of what Medx was about so I would like to apologize to Dr. Chu and everyone else for not listening!

The one thing I do remember about Sunday, besides Britt’s presentation, is a video we watched about sick kids. There is just something about seeing a sick kid still smiling that makes me think changing the world and healthcare will actually be easy! These kids were a lot more interested in getting camera time and having fun than they were about their own medical problems. As a patient I think it’s easy to dwell in the suffering and forget to smile and live like kids do.

I would like to take this moment and thank all the volunteers at Medx. Your generosity of time and willingness to help made my experience amazing! I can’t thank you enough for the multiple times you got me ice packs which allowed me to continue with this crazy adventure called Medx!

Volunteers

 

What I now know…-

First, and most importantly, I now know patient’s stories need to be shouted from every mountaintop, included in educational material at medical school, be part of every conference, apart of every medical magazine, and blasted all over the Internet. We, the patient, are the reason doctors have their jobs, insurance people make way to much money, and entrepreneurs are busy trying to create technology in order to help us. To often patients are looked upon as a commodity to make money off and that’s wrong! Our stories have the power to bring even the most harden CEO to tears, educate, create curiosity which is the basic foundation of all science, and provide comfort to those in need.

Thanks to the magic of Medx, I was able to witness firsthand the power of a patient’s story on industry. From what I understand, this individual representing industry is still trying to help this particular patient and I have to believe it is solely because of their powerful story. Capitalism makes it to easy to hide or forget that the numbers on income statements don’t represent money; it’s a collection of individual patient stories. Market forces are great for creating better TV’s, getting me very cool cell phones, or developing cars that are now basically mobile command centers but it doesn’t do a great job at remembering we are individuals that are hurting!

I now know that our caregivers (i.e. family, friends) probably deserve their own conference where they are the center of attention! These are people that are there at our worse but almost fade into the background when we are back at our best. They don’t ask for recognition, rewards, or attention. All they want is to see our smiles again or to get back on the slopes with us. As a patient I know I try to honor their contribution to my health by doing that extra set at physical therapy, going to conferences like Medx, making sure I’m there for another patient that needs help, or by getting back on my skis so I can experience the fun of life again! This video is dedicated to my family and friends that have put up with me at my worse and have kicked my ass when needed so I can return to my best.

I now know that I still don’t know exactly what the e in ePatient stands for but I believe that is how it should be. At Medx I heard it stood for everything from electronic, engaged, evolving, or empathetic. As ePatients, I think it is up to us as individuals to define for ourselves what the e means because that will help us focus our work. No 2 patient stories will ever be the same so it should follow that no 2 definitions of the e would be the same. Personally, I favor evolving but that is because I’m still relatively new to the world of ePatient and I’m still discovering my own voice.

I now know that Medx helped me tremendously in regaining my fighting spirit that the pain has been doing an excellent job of stealing. I’ve been extremely lucky in life in that I got to experience a lot growing up that many people didn’t before my arthritis decided to try and slow me down. Although my ego is still adjusting to being slowed down by Arthur, my desire to help others and fight back against a healthcare system that seems to favor money over patients has never been stronger! After witnessing so many inspiring stories of patients changing the world I now know I want to be part of that. Lets do this!

Finally, I now know that I need to work on being more vulnerable as a patient and as a person. For a long time now, I’ve dealt with pain by shutting down and hiding from the world until I felt like reappearing. That method recently caused a new friend of mine to worry about me which was the last thing she needed! This friend has her own medical problems and doesn’t need anymore stress, especially from someone who understands what its like to live in pain. Being vulnerable is not a weakness I’m learning, it’s just a part of being human. Not only that, being vulnerable is a perfect opportunity to “change the goal from happily ever after to we are a force when we work together.”

Britt & Me

 

 

P.S. Just to make sure everyone is on the same page, PLEASE, PLEASE have me back next year!!! I want to experience this again and continue my journey to improve. Also, if you need someone else of the ePatient Board please consider me. I would love an opportunity to help create this experience for others!!!

 

P.P.S Thank you to all the Medx sponsors! You have changed a lot of lives by your generosity!  They are;

Amir Dan Rubin, CEO of Stanford Hospital & Clinics
Stanford Hospital & Clinics
300 Pasteur Drive
Room H3200
Stanford, CA 94305

Ted Tussing, Director of Stanford Medical Center Corporate Partners Program
TTussing@stanfordmed.org
Stanford University Medical Center Development
3172 Porter Drive, Suite 210
Palo Alto, CA 94304

Ronald G. Pearl, MD, PhD
rgp@stanford.edu
Chairman, Department of Anesthesia
300 Pasteur Drive, Room H3580
Stanford, CA 94305

Teresa Zayas Caban
Teresa.ZayasCaban@ahrq.hhs.gov
Center for Primary Care, Prevention, and Clinical Partnerships
Agency for Healthcare Research and Quality (AHRQ)
John M. Eisenberg Building
540 Gaither Road
Rockville, MD 20850

ePatient travel was provided by (only if you received travel grant):
Dr. Bassam Kadry, Department of Anesthesia, 300 Pasteur Drive, Room H3580, Stanford, CA 94305


Comments

“LET’S BREAK NORMAL AND DREAM AUDACIOUSLY” — 4 Comments

  1. Yer makin’ me tear up in a coffee shop, dude. So embarrassing!

    A few thoughts:
    Great post!
    One of my favorite ePatient Es is “empowered.”
    I hope you will try to take better care of yourself, but I do know how hard it can be to slow down. No one wants to miss anything fun/important/interesting/beneficial.

    You learned a lot. I am looking forward to watching you grow online, and hope we get to work together to make something awesome happen!

  2. Great blog, Alan. Hope you get to go back.
    One thought though- Never trust a doughnut that doesn’t eat meat.

  3. Those doughnuts were crazy good! They had a lot of flavor and tasted clean. Big fan of vegan doughnuts now.

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