I was born into a generation that can remember when telephones had curly cords and rotary dials and the only color they came is was black because that's what color telephones were. We also got immense satisfaction from being able to slam the handset into its cradle, putting a physical exclamation point to the end of our conversation if the situation warranted it. When you dialed "0" you got a real live person. My Great Aunt Mary used to be a switchboard operator back when you had to ask them to dial the person you'd like to speak with. We always said that's where the stereotypical operator's voice with that nasally sound came from that you hear in old time movies because that's how she spoke. When she said my sister Lorraine's name it came out "Lo-ray-un".
So fast forward a half century. Things have changed. Phones no longer tether us to a wall or a counter or a desk. In fact, you can go into the middle of the nowhere with no person in sight for miles and still talk to someone because your phone is in your pocket. Always within reach.
Not only can you TALK to someone, but you can SEE them, too. If you plan on calling in sick to work you better look the part now and be phoning in your jammies from your death bed because it's not enough to sound sick from your beach chair.
You can now address a roomful of people in London while sitting in your living room in Florida. I know because that's exactly what I did last week.
After my interview with Craig Lipset of Pfizer (see this post for how we met) at the Disruptive Innovations conference in Boston this past September, I did some networking and met many amazing and influential people. By way of Pablo Graiver , from www.trialreach.com/, I met Maneesh Juneja from www.health2con.com who reached out to me.
Because of my patient perspective on how clinical trials are conducted – and my willingness to share it – I've got something to say that folks in the pharma arena apparently consider worth hearing. It seems that while many of these folks have dedicated their very lives to research, most have not ever come face to face with an actual volunteer subject nor listened to them expound on how a trial might be better designed from the patient perspective.
I am a focus group of one.
So there I was, up on the big screen with my 10 foot tall head sharing the story of my clinical trial (the TRANSFORMS trial conducted by Novartis for Gilenya, the first ever pill form of treatment for multiple sclerosis). I told them how it came to pass that I found the trial, and then how I could find nothing on the internet describing a clinical trial from a patient perspective.
So I blogged it here. (There's no link because literally, it was this blog. Right here.)
I decided that if I couldn't find the info I was looking for, then I was going to document my journey and let everyone know I did it. And if I can do it, anyone can because we all know by now that I am the biggest hypochondriac that ever lived.
I ended my talk in London (while sitting at my computer with no shoes on my feet, curling my toes into the carpet) with a sort of laundry list of things I'd like to see change in the world of research. At least those things which effect the end user experience.
I figured if I was going to be talking about how things needed to change, the least I could do was give some examples of exactly what I meant by that.
First off, that Informed Consent document (that is almost as thick as my whole set of 1960's World Book Encyclopedia that's all swelled up from having gone through a flood) needs some companion booklet to go with it. Sort of a chaser to help smooth out that bare whiskey dose of reality (and a whole lot of possible negative outcomes) that comes with it.
The informed consent document has to outline the purpose of the trial, the known side effects of the medication (everything they ever found out during earlier, even unrelated, trials), whatever adverse events might be predicted along with a very clinical description of the tests that will be performed to monitor the safety and efficacy of the drug along the way. The positive, upside of what they HOPE will happen seems like a byline or afterthought. Possibly a footnote1.
I propose a user friendly, brochure type of Guide to the Clinical Trial that tells you, in terms normal people can understand, what to expect. A brief outline of the goal of the study, along with pictures of the equipment they will use to test you, and pointers about making the tests go more smoothly (like drinking lots of water before a blood draw). Just something like a Chamber of Commerce version of "Welcome to the Trial".
It might sound silly but I insist it would have been a comforting thing to read after Googling the guts out of all the stuff I deciphered from the Informed Consent.
I also told them that the people who enter the trial, unless they are the healthy control subjects who are in it for the profit, are usually at their wit's end. Looking for relief from their illness and hanging whatever shred of hope that remains on this new drug I can't get anywhere else yet. And their biggest hope is that they aren't wasting their time taking a placebo. They are at their most vulnerable and need to be treated as the humans they are. With respect and compassion.
I won't go into everything I suggested. I'll save that for another day. Let's just say I was well received and felt so honored to be asked to participate in this Health 2.0 event.
I still can't get over how I have tripped and fallen head first into the role of ePatient Advocate. I hope I can continue to represent for ePatients, clinical trial patients, plain old patients, and humans everywhere.
A big thank you to Maneesh and www.health2con.com for giving me a platform from which to share my message.
I'm usually so excited about the advancements in technology and how rapidly they are coming out with new gadgets like top quality webcams, but this time I would have loved for my talk to have necessitated a trip to England. Ah, the down side of Skype.
1 Just an example, not a bona fide footnote.