Hi I stumbled across this thread while looking at some reports on my web site. I'm glad I did because, through your eyes, I can see that I've made a few mistakes.
First of all, let me say I understand the skepticism, but it's misplaced. I'm really only trying to help. I clearly gave you the wrong picture, but let me explain and respond here.
Secondly, I only provided an option for CPAP users to contribute because I felt there might be some who see the value of what we are doing and want to help out.
I do expect to be able to provide some real benefits for patients who contribute to the project financially and join our advisory board -- mostly in the form of free equipment to test out -- but that isn't the point.
The way Indiegogo works is it is all centered around perks. So, if there happened to be some CPAP users who want to see us do the work we've set out to do, there really needs to be a 'perk' level associated with it to make it work in Indiegogo. So, I could have left CPAP users unrepresented in the perks or I could have done what I did, created *some* kind of perk.
Now, I think I should modify or remove them.
I also think I tried too hard to include every "stakeholder" in my message -- it's difficult to write for so many different audiences who each have their own perspective on CPAP therapy.
I created CPAP Horizon Project primarily to improve results by helping those who *serve* patients -- Physicians, Sleep Professionals, and CPAP Therapy providers. It's about giving providers the tools and information they need so that they can do all the right things and still manage to keep the doors open. (And yes, @DocWils, CPAP Provider and Physicians need a LOT of help if they are to do the kind of follow-up, education, troubleshooting, ongoing support, etc. that they need to do.)
I'm committed to solving a fairly complex set of problems which, ultimately lead to poor results for a large percentage of the sleep apnea population.
This is my first real step with this new organization, but it comes down mainly to this...
The needs of undiagnosed Sleep Apnea sufferers, and the average CPAP user, are not being effectively met. Thank goodness there are a few places like this forum where people can go to get the help they need because oftentimes, the system doesn't provide it.
CPAP users, in general, and on average, do not get the support and care they need to have the best possible chance of success and the best possible experience. That, we know, is a fact. I firmly believe that does not need to be the case.
With the right 'best practices' in place, the average results can be much, much better for millions of people. If I can help make that happen, I'm going to do it.
Let me answer some of the questions that were floated above.
(07-14-2013, 02:24 PM)PaulaO2 Wrote: They want the money to start it up and then charge everyone a monthly fee...for what? Sounds nice but...what's the PURPOSE?
The only monthly fee we charge is to CPAP Providers. Anyone else who wants to be a member and support what we are doing pays an annual fee. Physicians pay more than individual medical professionals, but they also get access for their whole staff.
The purpose of the monthly fee is to fund technology solutions, patient awareness campaigns, the maintenance and data collection associated with our therapy protocols, and a health information exchange that allows critical information to be shared among various providers to improve quality of care -- to name a few of our current projects.
The things we are working on are the things that must be in place if we are going to see any real improvement from the current situation.
For example, we are creating a web and mobile app called ManageMyCPAP with funds from CPAP Horizon Project. The purpose of the app is to make sure that every CPAP user gets the kind of follow-up and hassle-free service they need. It provides a direct connection for CPAP users to their to CPAP Providers and Physician. It's not really that fancy or high-tech, it just makes it easy to stay in touch, order supplies if needed, update basic address and insurance information etc.
Appropriate follow-up -- just asking a few questions a few times during the first few weeks of therapy -- or just checking in a couple of times per year -- increases chances of success dramatically. I want to make sure that follow-up happens.
(07-14-2013, 09:56 PM)JJJ Wrote: After reading the site it appears his plan was to appeal to as many groups as possible in order to maximize donations, never mind the fact that some groups are at cross purposes with each other.
Yes. I definitely want to get as many contributions as possible. But, like I said before, trying to make my appeal relevant to CPAP users came off way wrong. I know better, I shouldn't have overreached like that.
But, your point about cross purposes really highlights the need for a better approach to CPAP therapy. Why should Physicians, Sleep Professionals, CPAP Therapy Providers, and CPAP users be at cross purposes? Honestly, it doesn't have to be that way and the fact that this is a common feeling amongst CPAP users just highlights that the system is not working right.
(07-15-2013, 07:47 AM)grumpycat Wrote: So, this looks like a provider oriented organization which sees an "irresistible product" in the CPAP and wants to cash in.
Yes. I create products. I've done so in many different areas but mostly in medical devices. I've created shoulder implants, knee braces, trauma products, among other things. I like medical devices because of the challenge and because there is more purpose to it than some consumer widget or another. I do like to get paid too. :-)
I focus on opportunity a lot because that's what brings about change in healthcare in the United States. That's what brings innovation and better therapies. Believe me, the government isn't going to fix these kinds of problems. So, we are left with private healthcare businesses who need to step up and solve the problem. If I'm going to recruit businesses to help me raise the standard of care, I can only do so by showing them how it will improve *their* bottom line as well.
(07-17-2013, 02:41 AM)archangle Wrote: Read their web page. It's pretty clear that it's about helping the doctors and DMEs, not working directly with the patients.
It would really be helpful if the CPAP doctors and DMEs were more knowledgeable and did a better job. Maybe this organization will help.
The skeptic in me worries this may just be about more effective marketing.
Thank you! I was getting a bit depressed there.
I'm not going to respond to every wrong assumption, but I did want to try to answer some of the questions that were brought up.
Also, I'm happy to answer more. I'm always very open to advice and feedback and, when we open our app to the next round of beta testers, I hope that maybe some of you will try it out and give me feedback and suggestions.
I'm off to dinner, but I'll be back at the computer later. Looking forward to getting to know you all better.