[Stitcher]

From my email Inbox...I am posting this purely for informational purposes!

Some of the information found in the survey Intro pages:
"Find A Cure Panel membership and participation is completely anonymous.
Your personal or contact information will not be shared with our clients, and you will be identified only by a 15 digit respondent ID number that looks like this: 40040-1234567890."
"If you choose to participate, you will most likely not get more than a few surveys per month."

Greetings!

There is a company called Find a Cure Panel that is doing survey work within the Parkinson's community. The survey is for patients and caregivers that would like to participate in online market research designed specifically for the PD community. The Northwest Parkinson's Foundation has offered to help them reach into the community - you are on the front lines and can give them the best input.

Find a Cure Panel will also donate $25 to the NWPF for the first 700 surveys that are completed.

We guarantee that your email address and other personal contact information will not be shared with anyone.

Once you sign up and are approved to go through the survey process, you will get a series of surveys over coming months. If at any time you wish to be dropped from the survey process, you can opt out with a click.

If you're interested, take a look at the link below for more information. The more people involved in gathering data, the better. Thank you for joining this effort and benefitting the community we serve.

Click here to take part in the survey!

Warm regards, and please feel free to forward this opportunity to anyone that might be interested.

Thanks for all you do,

Bill Bell
Executive Director
1-877-980-7500

[jeanb]

I got one too!

[Fiona]

Yeah, I received one also. I dropped a line to Bill Bell and asked for clarification. The project seems a little specious to me. They're calling it "Find A Cure," which definitely is going to bring an emotional response, cuz of course we all want that. But what they are doing is finding ways that they can better market medical products to us. That's not really about finding a cure. At all.

But, they are making donations in our name to one of the biggest orgs, so that's why they say that it goes toward a cure. Basically, we are working for them by providing detailed information about our medical consuming habits, and in return we are getting paid for our time, except that they are automatically donating our salary to some general fund somewhere, which who knows exactly how it's being used.

I guess some people would be glad to have the part-time work. But somehow painting the picture of a business entity being proactive towards a PD cure, and our participation in it bringing us into this philanthropic fold, when their real purpose is to find out how to make more money from us...why don't they just pay people who are interested in doing the surveys for their time spent, and then let those people decide how to use the money to help PD research?

It makes it seem like it's giving something for nothing. It's not, and it's not clearly focused towards our benefit.

[Fiona]

Ok, re-read it and realized the money is going to NWPF, so that's more specific. Still.....my points remain. But maybe I'll ask Bill how they plan to use the money.

[jeanb]

If Bill B of NWPF endorses it - that's enough for me. I'm happy that NWPF will benefit financially.

[Stitcher]

If you look at the Introduction process with the survey, which I did...you can do this without clicking "submit" at the end...you are asked what disease you have from long list of diseases. So, this made me wonder if other disease organizaitons are involved and receiving the $25 donation on a specific number of registrations.

Not that this matter a lot, but it would be interesting to know...maybe.

[Fiona]

I have absolutely no question in my mind that Bill Bell is a deeply wonderful person, and it's really not that I object to NWPF getting some more money.

However, when I wrote him about this, he asked me to tell him what I thought. I was going to post it myself to get all of your thoughts on it, so it wouldn't just be my mouth heard from.

But thinking about the way that this is presented by the marketing research company just doesn't add up for me. I would rather find another way to benefit NWPF, than by giving some entity another means to exploit us. They do this by presenting their market research (and this is not uncommon) as a way for our community to empower ourselves, to "make our voices heard." As this particularly dovetails with many of our concerns, this is very potent language. But if what they're doing is asking whether you heard about Drug X on tv and asked your doctor about it or if your doctor told you about it initially- I'm sorry, that's not empowering us, that is just studying our habits so they can figure out how best to increase the market share of Drug X by manipulating us.

Now if they were honest about that somehow, I wouldn't object quite as much. But couching it in the language of empowering us to push for a cure - the only element of this that at all contributes to that idea is raising money for NWPF. I'd rather do that in some way that is more above-board, and doesn't resemble feeding a bunch of vultures trying to figure out how best to profit from our needs. I think you can bet on the fact that if a cheap cure were to be unearthed, they wouldn't be interested at all in us.

This is the kind of thing that I think we have to be critical and conscious about. SO many of us feel so urgent about our conditions, we'll swallow anything. It's really typical of marketing focus groups to describe what they're doing as giving people choices, when actually they're trying to figure out how best to work us. I'm not criticizing Bill or NWPF, but I am criticizing the style and manipulative tone of this outside venture, because I think it's essential that we don't squander our energy and resources on efforts that lack sincerity. I'm going to send Bill a link to this thread. People can do what they want, but I think this is an instance where we can say wait a minute, exactly what is in this for us really, and start to intervene in the mechanism where funding and influence start to compromise us because inevitably we will then have to bow down to "donor sensitivity."

[Fiona]

Oh, and another thing - for me if people are going to say, "this is going towards The Cure," I do want to know what that cure is that they're talking about. It's not enough anymore to squander our energy and resources without being empowered to know where they're going. And for a marketing research firm to adopt that language really is rather cynical unless they can back it up pretty specifically. Talk about snake oil.

[Stitcher]

I have contacted the company, Assist Your Team Surveys, directly and am awaiting their reply.

[jeanb]

Here is the contact info for findacurepanel:



"what's in it for me" is being able to contribute to NWPF - an org that works hard for pwp. But here's the thing - it's not all about me - or trying to figure out what's in it for me. I think it's about pwp and orgs and people helping each other.