Your HIPPA Privacy Rights vs Info Release For Product Trial

[johnnygoodman]

Howdy CPAPtalkers,

I'm running into a sticky situation and want some CPAPtalk feedback before I continue down the path. Many CPAPtalkers have expressed to me their desire to participate in manufacturer product trials. Between CPAPtalks size and CPAP.com's industry contacts, I think I can pull this off. Here's what it would look like:

1. Enrollment. 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.

2. Data Drilling For Manufacturers. A Mfg would come to us and request patients with certain parameters for product trials. We would drill the information and provide them with the amount of type of trail participants they are looking for.

3. Manufacturer/Product Trial Contact. CPAPtalk would step out of the process and you would deal direct with the manufacturer(s).

I have concerns and questions regarding this process:

1. HIPPA. You would have to waive your HIPPA rights to privacy when you enrolled in the program. This is because the program would exist in order to turn your information over to manufacturers for product trials.

2. Profit. CPAPtalk.com is donated to the CPAP community by CPAP.com and BillMyInsurance.com. We have made major gains due to this website, but none of them have been financial. CPAPtalk.com is a charity. This type of program could be a potential profit stream. A profitable business would get more software focus. Currently, CPAPtalk competes with CPAP and BMI for this focus. It could be that this is the ticket to massively upgrade cpaptalk, or it could be a case of the greedy CPAP.com capitalists using this place for evil, illgotten gains.

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

[JCraig]

I would love to "beta" equipment!

[roster]

There is no free lunch. Capitalism is a big factor in our quality of life. Go for it.

[Bob...]

"Does the arguement "if you don't want this, don't sign up" hold water? "


Does for me!

Bob

[fujiinator]

I would be interested in participating. At least as long this is not a way for a manufacturer to just sent the product trial candidates or group Spam on their products. I am relatively new, but would like to become more active in my own therapy and possibly play a part in adding more user friendly products.

[cpapjack]

Count me in as a guinea pig.

[greyhound]

I think it would be OK as long as it was clear that you were limiting your HIPPA rights only with respect to the equipment trial.

[wolftracker]

depending on the type of information they are looking for

would cpap.com control the info ... and only provide names and
contact points ...

or would cpap.com just give complete access to the manuf.

that could be important

[johnnygoodman]

Greetings,

Mfg's would specify parameters for patients they needed to trial. CPAP.com/CPAPtalk.com would release the names of all patients who qualified to the Mfg with the understanding that the information is to be used exclusively to schedule and conduct a trial. Mfg's would contact patients for this end and move ahead.

#1 CPAP.com/CPAPtalk.com would not use the data for any purpose other than passing it to Mfg's for product trials.

#2 Mfg's would be disallowed from using it for any purpose other than the product trial. I'd get this in writing from each Mfg before I'd send any data.

A good and important question.

Johnny

[krousseau]

1. Many of us have already released significant amounts of personal information in our posts.

2. Informed consent is a standard of medical practice and research. You present and explain the process/procedure/research/product testing to be done and specify the info to be released-I sign YES release this info-I want to participate-that is informed consent. The statement "if you don't want this, don't sign up", holds water. The issue would be is it a general release to any and all testing or would you put a notice on the board that "NewPAP" wants product testers for a revolutionary new all in one XPAP machine (auto, bipap, humidifier, heated hose-add whatever you would like)

3. Put my name on the list to have the opportunity to participate.

[Bamalady]

I would like to be included in the trials as long as any info is restricted as you noted. I am always doing a bit of experimenting anyway, and if I had the opportunity to help myself and others by trialing new products, I would go for it.

[Guest]

i would do it
i beta test software. do i could be a experiment

[wuelfman]

count me in

[wolftracker]

with the requirements johnny has stated ...

[Snoredog]

as long as that Personal Information needed doesn't include Social Security numbers. Data like that sitting on any web site is a huge huge mistake especially for the person who's data it is.

I noticed the last time I gave blood the Blood Bank I donate to no longer requires your SS# for identification purposes. That is a relief because they are sitting there in a Rotary lodge with a laptop using a wireless connection taking your personal information.

You can promise the world that you can keep their personal data safe but as soon as that CD-ROM is handed off to a Mfg. rep that data is now sitting on their laptop, probably using a wireless connection the majority of the time and beyond your control to control it.