Sunday, August 17, 2008

Ooo! Ooo! I Have A Question!!...

The day I stop questioning things (especially authority) is the day I might as well step off the curb into the Big Bus Headlights in the sky.

I received an email last week from a company requesting my participation in a survey regarding TYSABRI (don't worry! I'll reprint everything right here for you to read.). I get email requests for all KINDS of things, which I half expect because I write a public blog about my life with Multiple Sclerosis. And for those of you not in the "know", the email address is specifically set only for responses from this blog...I have another private email my "other" friends and family use to contact me. In fact, probably not unlike YOU, I have several email addresses...tis the world we live in.

When I receive an email at the above addy, I can be certain the address was discovered only right here on CHEESE...someone would have to come to this blog to be able to contact me at that address. So, you can imagine my semi-surprise (I feign excitement here) when the above mentioned request arrived to participate in a TYSABRI survey...the *requester* must have lurked here on CHEESE (probably Googling *Tysabri*), noted I am currently accepting this drug, and sent me the email. Small world we live in.

Here is the initial email I received:


I came across your website, and wondered if you would be interested in participating in a marketing research study we are conducting. We are seeking to pay people for their time and feedback on a marketing research study about the Multiple Sclerosis - particularly those on Tysabri. I copied the main information below.

Thanks you.

Multiple Sclerosis Marketing Research Study

We are recruiting men and women who are diagnosed with Multiple Sclerosis (M.S.) and are currently on Tysabri or have been on Tysabri in the past.
We invite them to participate in inidividual research interviews with a moderator:
IN-PERSON: at a professional marketing research facility in downtown Boston, Massachusetts or Nashville, TN
BY PHONE: during late August - early September

Your participation would involve one session that will last approximately 1 hour (multiple times are available). You will be paid $200 for your time and opinions.This research is being conducted by a professional marketing research firm Marketry Inc. For additional information regarding this study, please contact the person below. Please include the following information: Your age, Your Current M.S. Medication, Your Prior M.S. Medication (if any), Telephone Number, Name, email. We would like to ask you a few questions to make sure you qualify for our study.Thanks much.
Mary Ann Smith-Janas
ph: 205-802-7252
fax: 205-802-7265

Well, hell...if you've read more than one post here on CHEESE, by now Y'ALL KNOW ME! I, of course, had questions. WHO really wanted to know my opinion (because frankly, opinions are like A-holes...everybody has one...another inherited saying from my mother. sigh) and why??? The scent of Big Pharma wafted in the air.

Soooo...I fired off THIS email in response:

On Aug 13, 2008, at 3:01 PM, wrote:

Ms. Smith-Janas,

Your email is certainly intriguing. I DO have one question, however, before consenting to your request: Who is your client regarding this Tysabri survey?

Please feel free to email me directly at as this is a confidential email address.

Thank you,

Linda D.

I also did a tiny bit of investigative research about the Marketing/Survey company and discovered they ARE a legitimate business. But I still wanted to know WHO in the world would pay me $200 for my opinion? This is what intrigued me the most because, I CAN BE BOUGHT! That's me enough and I'll whistle *Dixie* out my behind for you if that's the "opinion" you are searching for. LOL It seemed *someone* with fairly deep pockets was willing to pay for my opinion (and obviously the opinion of other MSers on TYSABRI) AND that opinion was WORTH something to them.

I received a fairly rapid reply to my above email:

Sent: Wed, 13 Aug 2008 1:35 pm

Linda, thanks so much for your note. I'm not able to reveal the sponsorship of the research. To maintain the integrity of the research and make sure comments aren't biased, oftentimes our clients request anonymity.

While I can't reveal sponsorship, I can promise that your identity, too, will be anonymous. Your name will NEVER be associated with your comments. Instead, my company puts together a comprehensive report that illustrates the range of stories we heard from participants - WHAT was said, never WHO said what.

The interviews are very conversational in nature and, I think, fun.
I hope you'll consider participating. If not, I definitely understand. Thanks so much for responding to my email! And for creating an interesting and well-written blog! :)

Mary Ann

Top secret? Hmmm...the scent of Big Pharma OR the Republican National Party grew stronger.

Now y'all KNOW what I think of pharmaceutical companies in general...they SMELL funny and we're just never going to be close friends! And y'all KNOW I have "issues" with our health care system in general in the ol' USA. I WILL NOT have my opinion bought to line the pockets of a company CEO who will NEVER IN THEIR LIFE BE FACED WITH THE DECISION TO BUY FOOD/PAY RENT OR PURCHASE THEIR MS MEDICATIONS!!! **Mumble, mumble under my breath**

But, then again, I DON'T know for sure WHO would be behind BUYING my opinion about TYSABRI and, "Mary Ann" seemed nice enough. I made a mental compromise: I would agree to participate in the company's survey, but I would NOT accept what felt/feels like *blood money* for myself...I would turn around and donate that $200-dollar-opinion to THIS organization supporting MS locally in my region. Yes, I WOULD steal from the rich and give to the poor, thus making my Robin Hood-esque *opinion* truly worth something.

But...I STILL had lingering questions...and...I just COULDN'T stop myself. I sent this email back Thursday morning:

Ms. Smith-Janas,

The notion of a Tysabri survey has my interest and I will definitely commit to participation. I don't know what else you might need from me at this time, but since I don't live in the Boston area, I would imagine you will need a phone number to contact me (as well as my FULL name!).

I, of course, have other questions of you/your company if you would be so kind to respond? I realize you cannot reveal the identity of your client, but I am certain other MS blog readers might like to know some of the "ins and outs" of your survey process.

  1. For instance, what is the ball park range of COST for your company to complete a survey such as the one you are conducting on Tysabri?

  2. Does this estimated cost include the $200 payment to each participant?

  3. How many participants do you expect to include in a survey generally?

  4. How does the surveyor justify "unbiased" responses in the light of participants being PAID to respond? In other words, how does the surveyor decide which surveys will include a payment to the participant and which surveys do not...or do ALL of the surveys done by your company include a payment to each participant?

  5. Do you enter a survey process with a specific "goal" in mind?

  6. Does your client provide the questions or justification for the questions you ask?

  7. Is each participant made aware of the final outcome of your survey?

  8. Will they be contacted directly, or is this information only made available to your client?

These are just a highlight of questions that come to mind about your business and this survey process in general. Thank you for your time and consideration.

Linda D.

**MAJOR SIGH with pining face**

She don't write...she don't call...(well, *she* also *don't* have my full name OR my phone number yet, so that could be part of the communication issue...hehe) I have heard nothing back from Mary Ann (I sort of feel like we are on a first name basis here...can I CALL you that?) and I WORRY I have once again ASKED TOO MANY DAYUMED QUESTIONS!!! **Another big sigh for effect**

Who knows? Maybe my email was lost in the email/Ethernet? Maybe HER email reply was gobbled up by AOHELL and I'll NEVER get any answers? Maybe my questions are just too big to bother with? It's JUST a stinkin' survey after all.

The worst part of my bad habit QUESTIONING? THIS organization loses out...I'll keep you posted...


Denver Refashionista said...

Nothing wrong with grabbing the $200.00 no mattter who is paying. Nothing wrong with donating and/or keeping the money either way. It is standard in market research to keep the client confidential. They probably are big pharma but this time they are paying you. Horray!



You missed out on influencing Biogen/Elan efforts to convince investors that MS Tysabri patients are willing to continue to take the risk.

There's no doubt that they've been working on this for the past two weeks. Emergency order here.

There's been lots of googling of Tysabri around the blogs. They are probably looking for folks who have already said that they are sticking with it.

Go ask Kim at Sunshine and see if she got the same email. Bet she did!!!!

And darn.....I spent how much time looking into Fampridine and Acorda Therapeutics, and what monetary benefit have I received? Zip. Nada.

Shauna said...

I am one of these people who answer a number of questions for survey telemarketers (when I have time) and fill out questionnaires. Because I work in the media I am often excluded right off the bat, but every once in a while I get to tell folks what I think about politicians or products. After I answer the questions I then ask who commissioned the survey. Sometimes they will tell me, sometimes they won't (citing the "privacy" issue).

For a short time in university I considered marketing as a career, so find these things interesting and I'm very critical of how the surveys are worded. I use the opportunity to ask questions of the surveyor or their manager if I believe the survey isn't well constructed.

I need a life, methinks....


Blinders Off said...

Since you are on Tysabri and you have no problem, giving your opinion that makes you the perfect person to participate in this survey.

An honest response good or bad is what this type of survey need and you are the perfect person to participate. Since you do not want to take the money for yourself, you have the right idea and that is kind of you on what you would do with the money. I hope your questions did not scare them off wanting you to participate in the survey...keep us posted.

Lauren said...

Well cramma ramma ding-dong..., I never received an invitation to participate in a Tysabri research/survey... harrumph!

Maybe they're afraid I'll correct their moderator's questions??? LOL

By the way Linda, I cracked up when I read your remark on another blog which said, "Yeah, what Lauren said."

atlantis said...

Gee, Sis,
Take the $200 and walk away .

Zee said...

I got an invitation to this survey too. I haven't responded yet (more because I'm lazy than because of lack of time :) so I found this post really interesting. Keep us posted on what Mary Ann sez when she gets back to you!!