Your HIPPA Privacy Rights vs Info Release For Product Trial

ehusen · Post by **ehusen** » Fri Aug 25, 2006 8:01 am

I'd be happy to give this a go as well. Where do I sign?

Amigo · Post by **Amigo** » Fri Aug 25, 2006 8:32 am

johnnygoodman wrote:
Are you, the community, comfortable with this course of action? Does the arguement "if you don't want this, don't sign up" hold water?

Johnny

I'm certainly comfortable with this approach as I won't be signing up. I'm simply not interested since my therapy and equipment are performing flawlessly. However, there are many here who will, and if that provides an income stream to benefit this wonderful site I'm all for it.

tlc95066 · Post by **tlc95066** » Fri Aug 25, 2006 3:58 pm

Count me in! I would love to participate in a study!

elliejose · Post by **elliejose** » Fri Aug 25, 2006 9:41 pm

Count me in also. I would greatly appreciate the opportunity to participate in
a study or studies. GREAT IDEA!!

kteague · Post by **kteague** » Sat Aug 26, 2006 12:49 am

When you mine the database and provide a qualified group of names, I understand that the testers have purchased a one-time use of the list, whether they call 1 person or 50, right? So the unused names are not transferable to another project. Is there a forseeable point where the testers become the relational organization and presume a right to communicate with you however they see fit?

Have seen this happen on a former job. We were not allowed to solicit members of a certain organization who had donated during a special effort. BUT, once they initiated a relationship with us with a communication beyond that initial gift, technically they were fair game for our communications by implied consent, which trumped the original agreement.

Informed consent is fine, as long as we're all playing by the same rulebook. What motivation would the manufacturers have to pay for our name the next time and the next time when they already have it? If I were them I'd be looking for a loophole to own the name.

I'd like to believe I'm not suspicious, just seasoned. And even so, I'm still interested.
Kathy

Guest · Post by **Guest** » Sat Aug 26, 2006 6:18 am

In light of the recent feelings of boycotting at least one specific corporation, would this information be available to any company who was willing to pay for the information, or would it be only to select companies?

Guest · Post by **Guest** » Sat Aug 26, 2006 7:47 pm

Anonymous wrote:In light of the recent feelings of boycotting at least one specific corporation, would this information be available to any company who was willing to pay for the information, or would it be only to select companies?

I sincerely doubt you'll ever find Resmed contacting internet equipment providers for lists of potential product trial candidates.

Wait. On second thought, they might. But instead of allowing free participation, Resmed would insist on charging us 40% more.

motherall · Post by **motherall** » Sat Aug 26, 2006 9:00 pm

This sounds very do-able and much like what we do when we begin our journeys into sleep chasing. I am on mask three in 6 months and am sure that one day I'll find the right combination. If manufacturers would do more studies with actual users, I believe we all would benefit. What is medically indicated is not necessarily conducive to patient comfort, so the more input from users the better. Count me in!!

bulldoger · Post by **bulldoger** » Sat Aug 26, 2006 9:43 pm

Count me in.

chdurie2 · Post by **chdurie2** » Sat Aug 26, 2006 9:51 pm

Please count me in, within the specified parameters mentioned earlier.

One question: How would the testing company/you know what our user habits are? Pick it off our profiles? As I recall, I haven't given very much info to cpap.com when ordering masks? Unless the company is just looking for cpap users, I guess.

Also, I don't think this group is typical of cpap users--the average cpap user
isn't muttering about his or her AHI, I don't think. But that's for the companies to worry about.

Thanks.

Caroline

Guest · Post by **Guest** » Sat Aug 26, 2006 9:56 pm

chdurie2 wrote:One question: How would the testing company/you know what our user habits are? Pick it off our profiles?

johnnygoodman wrote:You would sign up as a Product Trail Canidate. You'd provide all manner of personal information include name, address, email, DOB, and CPAP usage information. It would all flow into a cpaptalk.com database.

chdurie2 · Post by **chdurie2** » Sun Aug 27, 2006 3:20 pm

Thanks, guest. When tired, I sometimes don't read too carefully.

caroline

wahooker · Post by **wahooker** » Mon Aug 28, 2006 6:47 am

I would be highly interested in participating in this.

Your HIPPA Privacy Rights vs Info Release For Product Trial

Re: Your HIPPA Privacy Rights vs Info Release For Product Tr

Testing

which mfgs

Mask	Humidifier

Additional Comments: Cpap at 10 now, initially 12, then 14