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:
http://gilenya.blogspot.com/2012/09/my-impressions-of-disruptive.html

Part 2:
http://gilenya.blogspot.com/2012/09/my-impressions-of-disruptive_19.html

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 www.unitedbiosource.com and Valerie McClean, Sr. Mgr., Patient & Physician Services for www.unitedbiosource.com . 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 www.theconferenceforum.org 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 www.bbkworldwide.com 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 www.theconferenceforum.org for inviting me to participate. It was an honor... and a dream come true.


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