Thursday, September 20, 2012

My Impressions of the Disruptive Innovations Conference in Boston - Part 3: The Interview

If you are just tuning in, you can read parts 1 and 2 of My Impressions of the Disruptive Innovations Conference here:

Part 1:

Part 2:

The evening of Day 1 of the event found me networking like crazy. I wasn't even trying but so many folks seemed to be genuinely interested in a patient's perspective on clinical trials that I got caught up in one conversation after another.  I learned a lot and was so very fascinated by every single person I met. It filled me with hope to see so many brilliant people working so hard in concert to try to effect change in an industry anchored securely in its mid-20th century fundamentals.

After the reception was over and a few of us were politely shooed out to the lobby so the ballroom could be closed, I found myself standing with Abbe Steel, VP, Patient & Physician Services for and Valerie McClean, Sr. Mgr., Patient & Physician Services for . We decided to go grab dinner and asked the concierge which direction we should walk to find a nice restaurant. We headed down the street which, at 9pm was bustling with activity. We talked about clinical trials, Big Pharma, and shoes. You know, girl stuff.

After deciding against Sushi and not finding many other choices we began heading back the way we came. We ended up eating at the restaurant inside the Fairmont. We spoke about a lot of fascinating stuff and before long I was lying awake in bed, staring at the ceiling, wondering how I would ever sleep since tomorrow I would be speaking to all those incredibly smart and talented people.

Next morning came and found me again sitting at the table in the back, listening to speakers share their ideas on topics I know little about. I had a moment of panic, wondering what in the world I was doing in this place and surely Craig Lipset, of Pfizer and event coordinator Valerie Bowling of would realize the error of their ways in asking me to participate.

Valerie had previously emailed a list of questions that Craig was going to be asking me so I'd have a chance to prepare. Initially, upon receiving the email, I printed it out and got a pad of paper and pencil, determined to write out profound, thoughtful answers sure to impress the audience.

Then I decided not to get so uptight about it. They were asking me about ME after all... and MY BLOG. So who is the expert? Nobody knows me like me.

That's when I let go and deliberately avoided reading the questions again. I was going to make sure whatever I said was fresh, unrehearsed, and from the heart. I was given this audience of the very researchers all clinical trial patients secretly wish they had an "in" with. To stand before them and say what I thought they needed to hear.

The idea was to get up on stage and be just as surprised as the audience by whatever came out of my mouth. I didn't disappoint myself. In fact, twenty-five minutes flew by and I wasn't anywhere near done talking but due to time constraints and others needing their chance, I reluctantly gave up the mic.

But while I was onstage, seated side by side with Craig Lipset, I have to say that I felt SO comfortable and maybe only a smidgen nervous -- at first. And  didn't even need the Xanax I was wishing I had. Craig is a wonderful person who is down to earth, compassionate, friendly, warm and funny. There goes my preconceived notion of what Big Pharma execs are like. And I got the chance to tell them so.

I told them that like many other people in the general population, I always thought of Big Pharma as a money-driven, faceless, evil entity that had only their bottom line at heart. But after meeting them I was able to see that pharmaceutical companies, from the execs to the researchers themselves all seem to be surprisingly passionate about their life work, dedicating themselves to helping others achieve better quality of life. I told them that I wanted to thank them personally for what they do every day because it gave me a better life.

I also shared with them pointers about clinical trial patients and how we really ARE real people and not just numbers. We have lives to lead and if they want to recruit and retain patients they need to try not to have too much of an impact on our daily lives. Pointers such as:

1. Combine appointments so we don't have to make a bunch of trips to the trial center.
2. Provide day care during visits.
3. Reimburse for gas/meals.
4. Reimburse lost wages for those who have to take time off from work.

I said travel to the study site was an issue for me since I feared driving on I-95. I was asked if I would have felt having a nurse come to my home was acceptable or too invasive. I personally would have welcomed it -- with at least a week's notice to clean the place up first.

We talked about how I got into blogging and how clinical trial patients are finding each other and sharing notes. I told them not to fear Social Media and the Clinical Trial Patient because we are not out to ruin all your hard work by comparing notes and inadvertently unblinding ourselves. WE of all people are the ones who want to see your research be successful and have the drug we are on win approval. We have the most at stake! So my suggestion is to provide trial-specific forums with first hand factual information patients are looking for in regard to their study. But also a place to commiserate as nobody can understand a clinical trial patient as well as a fellow lab rat.

After my interview I was greeted with resounding applause (I LOVE that sound!) and I got lots of compliments as I returned to my seat. That's when I remembered the microphone and went to the sound booth to have it removed before I accidentally burped or something and ruined the illusion of sophistication I had worked so hard to pull off.

While getting de-mic'd (it's a word now) I noticed someone coming at me from the left. It was Donald Stanski, MD Global Head of Modeling & Simulation at Novartis Pharmaceuticals. He came right up and gave me the biggest bear hug! He told me how proud he was of me and that I did a great job. I can't tell you how wonderful that made me feel.

I did some more networking and was greeted with rave reviews of my talk. Many of these researchers have never before met a real live patient. I likened it to looking inside the cage and being surprised that the lab rat can speak!

I was interviewed by Aaron Fleishman of and his blog post should be up tomorrow I think. I will share a link when I get it. I am going to do a reciprocal interview on his take of the conference. I just need to do some grocery shopping, a little laundry and pick the kids up from school, but it's on the agenda.

I had to catch a plane not long after that. Sort of like my carriage turning back into a pumpkin. I left with a fist full of business cards and a couple of pens, hoping to connect with as many people as I can and keep this dream of the ePatient Making an Impact on Clinical Trials and Social Media alive. I want to stay proactive and be an advocate for all clinical trial patients. I'm just not sure how to do that. One thing's for certain, I have found that when a new door opens, I'd be a fool not to go through it and see what life offers next. So far it's been an amazing journey.

Thanks so much to Craig Lipset, Pfizer, for reaching out to me initially, and to Valerie Bowling of for inviting me to participate. It was an honor... and a dream come true.

Wednesday, September 19, 2012

My Impressions of the Disruptive Innovations Conference in Boston - Part 2: The Event

Read Part 1 of my trip to Boston for the Disruptive Innovations conference.

Day one of the event kicked off with a breakfast from 7:45 - 8:30am but I was not present. I was next door to the hotel at FedEx Office store getting some business cards printed up. Now one might think, knowing I have been in printing and graphic arts all my life, that I would have come to town more prepared with a fistful of nicely designed, embossed cards printed on fine quality linen card stock. No. I came with one print out of a hastily designed card on 20# copy paper asking the good folks at the FedEx place to work a miracle and do so in under an hour.

There he is, oh so carefully whacking my cards
apart all crooked and off center.
They accepted my challenge and I got what I deserved. When I owned my own print shop I had a sign on the wall that stated "There are three ways to have your printing done: fast, cheap and good. Pick two. You can have it fast and cheap, but it won't be good. You can have it cheap and good but it won't be fast, or you can have it fast and good but it won't be cheap." I fell victim to my own rule only they had kicked it up a notch and I only got one of the choices: Fast. It was not cheap and they did a terrible job, but hey, I got something to hand out and didn't get a cramp in my hand scribbling it myself.

By the time I had found the ballroom where the crumbs of breakfast remained, I made my way to the tables set up before the stage and selected a seat in the back so I could take in all that was going on around me. I sat with Aaron Fleishman from and had a great time interacting with him.
Sitting in the back.

I started off by taking notes on the talks from several of the speakers. Then after a while I got that same fidgety feeling I used to get when taking notes in school and decided I didn't need notes on every speaker. If I spent the whole time looking down at my paper I might miss a visual aid. I decided to relax and soak it all in with no regard or pressure about recording it for posterity.

Please note: Craig Lipset is much better looking than that IRL.
So I can give you the gist of things, or I can make it even easier by giving you a link to all the great large scale visual notes taken by Jonny Goldstein . This guy was amazing. He stood with his easel at the left of the stage and denoted the essence of each presentation in graphic detail. At each networking break, his drawings would be on display for up close inspection. Here's one I captured with my cell phone camera.

 The presentations were all motivating, uplifting and hopeful for a future where the stodgy old traditions of science can someday catch up with the breakneck speed of technology and merge in a symbiotic relationship that means better medicine – faster – for all.

There were presentations about thinking outside the box (which has become an "inside the box" expression considering its over use). Examples like the ones Jon Platt gave dramatically illustrated the issues that need to be addressed. He spoke of the Five Monkeys, The Banana and the Ladder Experiment. In the experiment five monkeys were locked in a cage, a banana was hung from the ceiling, and a ladder was placed beneath it. When a monkey would climb the ladder to go for the banana, he would be sprayed with ice cold water. The other monkeys would also be sprayed.

Seeing any of the cell mates try to go for the banana, knowing they'd be sprayed, the rest of the bunch would attack the ladder climber. After a while, they all quit climbing the ladder. Then an original monkey would be replaced with a new, unsuspecting monkey. When that monkey attempted to go for the banana, the other monkeys would jump on him and beat him up. Eventually, all original monkeys were replaced and the banana wasn't even there any more, yet the cultural learning of how any monkey who goes near the ladder needs to be beaten by the rest of the mob remained. They obviously had no experience with the water spray or even the banana reward, yet they had done what they had learned "because that's just the way we do things around here."

Jon Platt, Director of ?WhatIf! Innovation Partners says that mentality no longer has a place in the science of clinical trials and needs to be replaced with more logical approaches that are intelligent, thought out responses to issues that face the world of research today.

He also demonstrated the power of positive thinking in the process of problem solving. We did some audience participation and learned how to steer conversations in a direction the facilitates positive outcomes.

One of the slides he used as part of his presentation demonstrated how an airline proposed to add more seats to the plane. As you can see, the seats are on the wing. He asked for us to shout out the good things about that and we heard "More leg room!" "Better view!" "Fresh air!" among the responses. His talk was very inspiring and uplifting.

Between each of the sessions, we had networking breaks and I had the most stimulating conversations with the smartest people I've ever met – and they cared about what I had to say. Someone pinch me and wake me up.

Stay tuned for Part 3. I'll share the conversation that I had on stage with Craig Lipset next.

Tuesday, September 18, 2012

My Impressions of the Disruptive Innovations Conference in Boston - Part 1: Arrival and Speakers' Dinner

I have been back from Boston since Friday night and I am just now rested enough from this past week to gather my thoughts to share. All that travel can take a lot out of a person and for those of you who live out of a suitcase, I have a new found respect for your ability to persevere.

 If you're just tuning in, here's the Reader's Digest Condensed version... I have MS, I decided to enter a clinical trial for Gilenya (then FTY720 / Fingolimod), blogged it from start to finish, caught the eye of Craig Lipset from Pfizer who reached out to have a conversation about clinical trials and social media, and subsequently got invited to speak at the 2nd Annual Disruptive Innovations conference held at the Fairmont Copley Plaza Hotel in Boston, MA.

I literally went from lying on my back in bed five years ago, contemplating suicide because my quality of life was so poor to addressing researchers and representing the empowered epatient on stage with heavy hitters beside me from the big pharmaceutical companies.

I have a purpose in life, finally, it seems. Some people live and die never feeling this passionate about anything; never feeling a "calling". I had to live 50 years before realizing I'd met my destiny. If it took getting sick and eventually taking my health decisions into my own hands to bring about this change in my life's direction, then I'm okay with that. I finally feel like I have something to share with the world. I feel like an individual CAN have a voice and if I choose my words carefully, maybe I can leave a lasting impression. 

Sounds grandiose? Well, I'm figuring out that you have to have dreams in the first place if they are ever going to come true. So why not dream big? I want to impact the world and leave an impression the size of the grand canyon. So some day there will be a velvet rope around the dent I make with a bronze plaque stating "Jeri Burtchell, pioneer and epatient, impacted the world of clinical research and gave lab rats everywhere a voice."

 But I need to get back to recapping the conference...

 I stayed at the Fairmont Copley Plaza Hotel (where the conference was held) and I swear to God I walked into that place feeling just like Cinderella going to the ball. Everything was ornately carved, gilded in gold, dripping of money. Chandeliers lit the lobby and a 100 year old mosaic tile floor strewn roses beneath my feet. I struggled to make sure I kept both glass slippers on my feet. I pinched myself regularly.

Source: via Jeri on Pinterest

Wednesday, September 12, the Speakers' Dinner took place at Davio's restaurant about five blocks from the Hotel. Until now, I had been on my own, not yet meeting any of the players in this fairy tale. I arrived at Davio's and found Ciara from and latched onto her as if she were a flotation device. I got a glass of white wine and proceeded to attempt to "mingle" among the sea of expensive looking suits. At first I was terrified. I was so out of my element. These are all important people. I'm just a stay-at-home mom who has a chronic illness and happened to blog about it. How could I possibly hold my own here?

But gradually, I began to relax. I would say the wine had something to do with it, but that's not giving these people the credit they deserve – nor myself! It turns out that, suits aside, they were all interesting, warm, friendly, funny people who were there because they all want to effect change and make an impact. I was welcomed with open arms, tons of respect, and more than a little curiosity. I felt like a princess and I kept checking that I still had both glass slippers. (To everyone else they looked like black leather tennis shoes since the combination of MS and walking five blocks to dinner negates the wearing of high heels).

Seating was pre-arranged so it was no accident that I had Craig Lipset on my right and Bonnie from on my left. Across from me were three more people who I can picture clearly and recall lots of the conversation about who they are and what they do, but the only business card I got was from Jules Mitchel, President of Target Health, Inc. He mentioned the possibility of involvement on a patient advisory panel.

The dinner was fantastic, the conversation topped it, and the grand finale of the evening was when Craig introduced me to John Orloff, Senior Vice President, Global Development & Chief Medical Officer of Novartis Pharma AG, and Donald Stanski, MD, Global Head of Modeling & Simulation at Novartis. As soon as I saw John Orloff, I recognized him from the conference brochure as he was one of the three men who led the Disruptive Innovations conference along with Craig Lipset from Pfizer, and Andreas Koester of Johnson & Johnson. I jumped up, feeling so overwhelmed to meet someone in so high a position at the drug company that gave me my life back, that I not only shook his hand, but insisted on hugging him. I think he was a little surprised by this greeting, but he took it in stride and allowed me to gush as if I'd just met George Clooney or something.

Donald Stanski claimed that he just carries John Orloff's bags around, but I have a feeling his job is much more important that that, judging by the business card he gave me.

I was privileged to have them both accompany me back to the hotel from Davio's and along the way we shared stories. I told them why I was attending and how I had blogged my clinical trial that they had sponsored and they were excited to meet a trial patient and hear how their work had so positively impacted my life.

Ever since my trial ended and so much time has now past since my last MS relapse (April 7, 2007 – 5 years, 5 months and 11 days, but who's counting?) I have wanted to express my overwhelming gratitude to anyone even remotely connected to Novartis and the clinical trials. I am their biggest cheerleader.

They both seemed very inspired by my story and motivated to help me spread my positive message to as many people at Novartis as possible. Who knows? There may be more travel plans in my future.

That night, I laid awake for hours, not wanting to miss a single moment of this amazing experience – afraid I'd wake up the next day having dreamed it all – not having any idea that it would just keep getting better and better.

Next Up: Day 1 of the conference.

Friday, September 14, 2012

cant wait to tell you all about disruptive innovations...

I'm living the dream...or rather I was. I just left the Disruptive Innovations conference in Boston, MA where Craig Lipset of Pfizer interviewed me on stage. I had a great time and surprisingly held my own with minimal embarrassment. I will share more when I'm not stuck in Philly blogging from my Kindle Fire With two fingers while people await their turn at the table in the pizza joint on B terminal. I just wanted to beat Craig at getting something blogged. When I get home I will share so many details you will be screaming at the screen for me to get to the point. Until then, try to take a bathroom break and get the drinks and popcorn ready. There will even be pictures.

Thursday, September 13, 2012

Tweeting the Disruptive Innovations conference

I was able to score free internet access from one of the nice employees here, so I'm going to try and live tweet highlights from my time here in Boston. If you want to follow along, I'll be using these hash tags: #dPharma and #GCT.