Saturday, May 12, 2012

How social media is impacting the face of clinical trials

I have been invited to speak at a conference to be held in Boston, Sept. 13-14, 2012.
The conference is about "disruptive" thinking in clinical trials. In other words, they want to shake up the traditional ways of approaching research and the patients involved, and take into consideration that, for better or worse, social media WILL play a part in all of this.

The reason for my invitation

I started this blog in 2007 to chronicle my experience in the TRANSFORMS clinical trial for the new MS drug Gilenya which is currently the only pill form of therapy FDA approved to reduce relapses in relapsing-remitting MS.

The idea for the blog was borne out of my frustration in trying to find any information about clinical trial experience from a patient's point of view. I was apprehensive about becoming a human lab rat and wanted someone to show me that it was okay and that they had been through it already.

Finding no such example, I decided to start the trial despite the lack of reassurance, and blog it from start to finish in hopes of offering those other potential trial patients something to find when they googled "clinical trial patient" in the future.

Along the way something unexpected happened. I gained readers who spread the word and shared my experience through other forms of social media. I was soon hearing from other trial participants -- many of whom were in the same clinical trial. We developed a camaraderie formed around our mutual trial experiences and sought to form a group to stay in contact.

I started a Yahoo group which was quite active for a while. It was private, by invitation only, and new members had to *prove* their membership in one of the Gilenya clinical trials to gain access to our group.

We shared our experiences, comparing notes and even questioning whether or not we ought to be doing so. But the human nature part of the equation took over and we were all driven to share and all of us felt comforted by the odd little community we had formed.

The Yahoo group was difficult for me to manage. It was not visually intuitive to me and my MS brain just couldn't get the knack of it. Instead, I opted to host a private forum on my own web space. It served the purpose until we were hacked and discovered posts of pornography littering our boards.

Finally we landed on a private group on Facebook. There we stayed until the drug attained FDA approval in September 2010.

After the trials were over, another group member decided to found the Facebook group "Gilenya (Fingolimod) Support Group" which is very active today with nearly 1,000 members. Many of the original trial members from our Yahoo group are still there, and remain active in helping new patients navigate their way through starting therapy. We are all there comparing notes, reassuring each other, and directing one another to seek medical advice rather than rely on a consensus on a Facebook group.

At the time, I had no idea that my blog, or the groups we formed afterward, was anything close to ground breaking.

Turns out that the pharmaceutical world was watching. Now I have an invitation to stand before those who shape the future of clinical trials and educate them on the e-patient and how we use social media to stay connected. 

Just as with the clinical trial, I don't want to face this alone. I want to bring with me the voices of as many clinical trial participants and I can gather.

 If you were in a clinical trial of ANY SORT, any medication for any disease, and had the chance to stand before those who are at the very top of these trials, what would you tell them? What would you ask them? What would you want them to know? It is YOUR CHANCE as an anonymous clinical trial subject, normally viewed as a set of test results, statistics, percentages, to be heard as the human being you are; to give feedback and suggestions about your experience.

I am going to be gathering as much info as I can about what clinical trial patients are concerned about most, and I am going to bring it -- on behalf of all of us -- to the attention of the top level people from all of the pharmaceutical companies who preside over clinical trials everywhere.

If you would like your voice to be heard, please take this anonymous survey I have created.

On September 14th during my portion of the conference, it will be live-tweeted on Twitter and as the date approaches I will let you know how you can join in.

I'm very honored to be given this opportunity to represent clinical trial patients everywhere and in particular the e-patient who is internet savvy and engaged in social media. Hopefully it will start a conversation with people in research that will effect change for the better for all of us.

Blog it, Tweet it, Facebook it, email it, use two tin cans and a string... I don't care how you help me spread the word, but let everyone know that this is our chance to be heard.


  1. So are you still on the gilenya?

    1. Hi Kellie, Yes! I am still on Gilenya. I was unblinded after the trial and found out I had been on the real Gilenya (then known as Fingolimod) from the very first day. So that means I have been taking Gilenya for close to five straight years now. August 20, 2012 will be my 5 year anniversary. Thanks for asking.


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