Your HIPPA Privacy Rights vs Info Release For Product Trial

bdp522 · Post by **bdp522** » Thu Aug 24, 2006 12:57 pm

Count me in! If I can do anything that could help make cpap better for anyone I am more than willing to be a guinea pig!

mousetater · Post by **mousetater** » Thu Aug 24, 2006 1:02 pm

I'd like to be a part of that. I think you will be fine as long as you ask for people to opt in, and not just use the list of people signed on to cpaptalk.com or who have placed an order with cpap.com.

johnnygoodman · Post by **johnnygoodman** » Thu Aug 24, 2006 1:29 pm

Greetings,

Another good question to which I have a firm answer. Social security numbers will not be collected for this system. I don't see the need and I see a lot of risk, as has been pointed out.

Johnny

wolftracker · Post by **wolftracker** » Thu Aug 24, 2006 2:07 pm

this would be for new products? right?

how could be protect the ideas that the manufactors would be
testing?

Like the hybrid. It was not released and every body on cpap.com
knew it was coming.

If you all use this forum ... how could the product ideas being
tested be protected.

Might thing about that one.

Wolf

Wulfman · Post by **Wulfman** » Thu Aug 24, 2006 2:18 pm

Wolftracker wrote:If you all use this forum ... how could the product ideas being tested be protected.

Non-disclosure agreements. And they WILL know where you live....

(just kiddin')

I haven't been much of the "experimenting" type with regard to my CPAP therapy, but I'm all in favor for those who want to participate. On the other hand, it would be nice to know ahead of time what they wanted tested and if there were any volunteers. That might make it appealing.

Best wishes,

Den

hoyle · Post by **hoyle** » Thu Aug 24, 2006 4:25 pm

I say count me in. If my opinions and observations can help anyone one with testing and using new products for CPAP, I will do it.

tooly125 · Post by **tooly125** » Thu Aug 24, 2006 4:35 pm

I LOVE FREE STUFF

I would definitely sign up.

Would the manufacturers be expecting product reviews to be written on cpaptalk.com and how would you feel about members reviewing the products they tested?

If you do make any money from this deal I think you should spend it as you see fit. There is nothing evil about making a profit on any part of your business.

By the way did I mention:
I LOVE FREE STUFF

snoozie_suzy · Post by **snoozie_suzy** » Thu Aug 24, 2006 6:14 pm

I'd love to be a part and help out. There is a lot of our information OUT THERE anyway. I went to the dermatologists last week and was reminded of this when I signed the 2 page HIPPA form, our info is floating around out there anyway. (I am careful about my social security though and actually would not write that on the form when it asked)

Johnny I'd love to participate if you haven't "maxed out" in participant numbers yet.

Suzy

rested gal · Post by **rested gal** » Thu Aug 24, 2006 6:45 pm

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?

Sounds fine to me.

inacpapfog · Post by **inacpapfog** » Thu Aug 24, 2006 7:27 pm

Because we are such a diversified group, I'm sure that ample participants could be found within any set of parameters!
Count me in!

bbeck4x4 · Post by **bbeck4x4** » Thu Aug 24, 2006 10:44 pm

sounds great, sign me up. If there is any way that I can help with a product being tested, I know that I am better off because of the help that I have received from the "group" support that I myself have receieved.

birdshell · Post by **birdshell** » Thu Aug 24, 2006 11:44 pm

I have participated in a study that just ended. It was a really great educational experience for me, and I found several VERY helpful pieces of knowledge from the researchers. This was a great advantage of participating, from which I am still benefitting. It was quite exciting to hear the results announced on the national news, knowing that as a result many women will be safer and healthier.

Johnny:
This sounds like a service that CPAP manufacturers would truly benefit from using. It would allow a more randomized sample to be chosen, although even participating in this forum is a limitation of the study.

We would also have to realize that some of us might be chosen and others not; some might be chosen several times while others are not chosen at all.

Some of us would be good potential study participants because we are experienced, but would never be identified for a study otherwise. Then again, Heaven knows, as a new CPAP user, I wanted to know WHO DESIGNED THIS STUFF!?! So even the new users may have a great (more unbiased) perspective for the researchers.

IMHO, HIPPAA is a total waste of paper. An unethical provider will not be stopped by my signature on a 1 or 2 page form in my file.

Further, CPAP.com will be another filter between us (as potential participants) and the researchers. Any additional profit would be earned in the best capitalist way: by providing a service that benefits everyone.

In short, I would certainly participate if my information met the requirements and I was chosen. It is especially fair to allow an opt in/opt out system for those who are unwilling to share any information, or to exert any additional time and energy to a study.

My only reservation would be knowing that any information (if CPAP.com should go out of business) would, in the end, be destroyed. It really shouldn't be a concern, as anyone opting in would trust CPAP.com to do so. Those who would not be so trusting could opt out, without any negative consequence for doing so.

Thank you for proposing yet another great service that would potentially be of GREAT BENEFIT for the CPAP community. And after all, isn't that primarily why we all participate in this forum?

cwsanfor · Post by **cwsanfor** » Fri Aug 25, 2006 5:12 am

This sounds like it might contribute to cpap.com's viability and also produce much needed research using the most knowledgeable user base available. I don't see a downside, if privacy is handled appropriately.

Guest · Post by **Guest** » Fri Aug 25, 2006 6:04 am

[quote="wolftracker"]this would be for new products? right?

how could be protect the ideas that the manufactors would be
testing?

If you all use this forum ... how could the product ideas being
tested be protected.
quote]

Simple---ONE disclosure (just one) from anyone and the trial stops immediately. Period.

sleepylady · Post by **sleepylady** » Fri Aug 25, 2006 6:52 am

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?

This sounds like a good policy to me. Sign me up.

Your HIPPA Privacy Rights vs Info Release For Product Trial

additional thought

Your HIPPA Privacy Rights vs Info Release

Testing

Re: additional thought