Tuesday, September 6, 2011

A surreal encounter between epatient and pharmaceutical exec

All this time I never knew that I was living the life of an "ePatient". That's what they are calling us. We are the new trend that's been developing since the advent of the internet. Patients who no longer sit back and digest only what our doctors have to say or what we can learn from local support groups.

We are the patients who have gone electronic. The ePatients. We google, we surf, we join yahoo or Facebook groups, we tweet, we post, we reach out. We read everything we can on the topic that is nearest and dearest to our hearts. Our own health.

I started this blog in 2007 when I was wrestling with the idea of joining a clinical trial. My first instincts were to head to the internet and look for info. As naturally as the generation before me might have reached for the Encyclopedia Britannica, I reached for my mouse.

What I found was that I couldn't find information regarding a clinical trial from a patient's point of view. I needed so badly for someone to put a face on the process and tell me that a) not everyone dies if they join a trial and b) they didn't actually have to live at the study center in a cage, running on a wheel.

Deciding that I needed to take the chance despite the lack of e-reassurance, I jumped in. But I vowed to write a blog so that others after me might have a place to go. To look in through the exhibit glass and see that the "specimen" which was me, was doing just fine. Just don't tap on the glass or try to feed me anything but that 50-cent handful of pellets.

So the blog was born. I got much feedback from MSers who happened to land on my page by chance. Almost always it was either encouraging or inspirational. Many times it was both.

To this day it shocks me sometimes to know that there are actually people who are reading along. I guess I think I am sitting here in my solitary room, drafting my memoirs and merely storing them in cyberspace, forgetting that others can and do read it. Thank you for that. I am truly humbled.

But you are wondering when I am going to get to the point, aren't you? I piqued your interest with the title and, in my patented style, am taking forever to spit it out.

Drum roll please.........................................

It all started with the purchase of my new Android phone. Never having had a smart phone before, I was playing with all the gadgets it came with. One of them was Twitdroid. I set up my @FingoHead account and went poking around at what the app can do.

Now, while I appear to tweet fairly often, it's all an illusion. Behind the smoke and mirrors I have Twitterfeed doing all the work. Taking my blog posts, shortening the url, and posting to twitter for me.

Because of this, I never go there or see the direct messages I may have gotten. But with this new app on my phone and the fact that I was clicking around checking stuff out, I found out that @CraigLipset had DM'd me asking if he could talk to me about being an ePatient who blogged a clinical trial start to finish.

I answered on a whim, not digging any further to see who he was, figuring he was either a fellow MSer or a fellow blogger or something.

Imagine my surprise when, after sending him my email address, I get a response within an hour, and it's signed by Craig Lipset, Head of Clinical Innovation, Worldwide Research & Development for Pfizer Pharmaceuticals.

Wow. I needed a moment to absorb all that. And another moment to do what we ePatients do best: go google the heck out of him and see if it was legit.

Turns out it was. I won't copy and paste the email here, but let me just give you the gist of it. He is interested in the ePatient and the whole social networking angle. He said that he thought my blog was unique in that I was writing about my clinical trial from start to finish (with a lot of other crap mixed in, granted -- that being my observation, not his).

Here's the part that really gave me goosebumps: He said that he had followed my blog for the duration of the trial and that he has included the story of my blog in a few presentations: "including this past June at the NIH". What I wouldn't have given to hear that!! I wonder if there's a podcast of it somewhere?

Here is a very interesting read. A blog post written by Craig Lipset on the topic of the ePatient:
https://science.pfizer.com/content/epatients-and-clinical-trials/

Long story short (okay it's too late for that), he asked if we could speak by phone. I sent him my number and he called last Friday morning. We spoke for over an hour and we both learned from each other, I think. If nothing else, he learned about the person behind the blog he'd been reading, and I learned that Big Pharma actually has at least one genuine, nice, down to earth, caring person behind the neon sign.

A big part of the discussion revolved around the future of blinded clinical trials and drug companies not having control over patients comparing notes. In the past, if you were in a clinical trial, the only place you might have encountered a fellow lab rat might have been in the waiting room of the study center. Now we can find each other everywhere on the internet.

It's only human nature to want to reach out and know you aren't alone. And by sharing experiences we can bond and overcome our fears.

The trouble is that bonding comes at a price.

I believe that not only will we see the Placebo Effect that is documented in clinical trials and a known phenomenon, but we will now start seeing the Hypochondriac Effect, where you find out someone else who is in your particular study (and may or may not be on the same stuff you are on) has a side effect (which may or may not be due to the study medication) and you suddenly are dead certain you, too, are having that issue.

What I have learned over the years of blogging the trial and observing/participating on message boards and support groups is that once we start sharing the questions of "is this a side effect" it can snowball out of control and start widespread panic.

Deep down I think that all of us suffer to one degree or another of Hypochondria. Some of us just openly admit it. :)

I cannot stress enough to anyone out there who might be reading this as they search for answers to their health related issues: You should speak to your doctor first and foremost. Go for a second opinion if you don't trust what he's telling you, and if you MUST go googling, do so on Google Scholar. Granted the results might be a little dry and hard to read, but they will probably be far more trustworthy than JoeBlow55's posted opinion on some unmoderated message board. (I made that up about JoeBlow55 so if that's you, here's my disclaimer: JoeBlow55 is a fictitious character who in no way is meant to be construed as an actual person in real life).

So, we concluded our phone call and I was left pondering the future of the ePatient and clinical trials.

Hopefully I will be able to continue as a trial blogger in the future... I am awaiting word of Novartis starting the long term Phase IV trial of which I have heard whispers.

If I'm going to be poked and prodded, I'm going to be here blabbing about it.

It's therapy for me, and if it helps you any, well, that's good, too.

And if you are reading this, @CraigLipset, thanks for the call -- I felt like I had been pulled up on stage to dance with the band for a moment. Best of luck in harnessing the empowered ePatient. You've got your work cut out for you.

6 comments:

  1. I am so glad you blogged about this, I had been hoping you would. Thanks Jeri, for all your sharing here over the years. I've said it before and I'll say it again. Your blog was absolutely instrumental for me when I was deciding whether or not I could be a trial participant myself. Any drug company who wants to hear what their trial participants are thinking and feeling can do no better than to read your blog.

    ReplyDelete
  2. Awww, shucks. Thanks Anne. the best part of blogging has got to be all the new friendships forged.
    Awww, shucks. Thanks Anne. the best part of blogging has got to be all the new friendships forged.

    ReplyDelete
  3. How awesome! It's amazing how far the ripples from a single drop can reach. :)

    ReplyDelete
  4. As someone who logs on almost every day, all I can say is that Craig know an insightful bloga when he reads one. for what it's worth, in addition to Google Scholar, Pub Med Central is a great place to go. It's maintained by the National Library of Medicine. By law, all biomedical research that receives government funding must be deposited electronically with NLM and made publicly available within 6 months. also I found a wonderful app called MS living medical etextbook. It's free and updated electronicallly. It's actually meant As continuing medical education for students, I think. it's a great resource to have around; you can even take the pre- and pst-chapter tests. I downloaded it for my ipad.

    Finally, thanks again Jerri. Liz

    ReplyDelete
  5. Thanks, Jeri, for sharing your experience. If you like the definition of ePatient that includes being empowered by accessing and sharing information about a medical condition online, the you are an OUTSTANDING ePatient.
    ePatients are an important participant in the future of medical research and developing new medicines, and I hope this is just one part of a larger conversation.

    Here is a link to the slides from my presentation at NIH this past June http://www.fnlm.org/Events_2011_Conference/downloads/presenters/Craig%20Lipset%206.7.2011%20Presentation.pdf. Your blog was on slide #3 (which is a bit buried in this PDF version because of some animation in PowerPoint).

    Best,
    Craig
    @craiglipset


    (BTW: You have been on stage dancing with the band since August 2007 -- you just didn't know we were in the audience. It reminds me of watching my 5-year old dance with complete disregard for anyone watching, it tends to be the most sincere.)

    ReplyDelete