Encore software still available says Respironics

Panhandler wrote:

DreamStalker wrote:Why do you care whether we take control of our own treatment?

I think it's a legal liability issue. It's hard to understand how people who do something stupid can sue and win, but they do, and we all pay for it. (Anyone have a soapbox handy?) Don't get me started!!

Can you please expand on your viewpoint. I don't understand.

Jen

Maybe I didn't read back far enough, so the comment may not have been appropriate to the context, but we don't understand why the device manufacturers, the DMEs the RTs, the MDs are all so negative about us CPAPpers making changes in their decisions about how we should be treated.

Part of it, I'm convinced, is due to the legal liability issues they're faced with. If they knowingly make and sell a faulty product or make a bad decision due to some ignorance or lack of interest, there is, appropriately, legal recourse to sue and collect damages. But the system has become so warped that people sue and win and juries award damages for the most absurd things, and we get companies behaving defensively in the most absurd ways. For example, I bought a jar of peanuts the other day that had a warning label on it: "Caution: Contains peanuts."

Two guys picked up a running rotary lawn mower by the housing to trim a hedge, lost some fingers, sued the manufacturer because, "they didn't say we shouldn't" and WON. Absurd.

Consequently, the legal counselors for companies, malpractice insurers, etc. are advising a very cautious approach to everything. So the company winds up saying, in essence, "There's not much risk if people do this within certain parameters, but there's even less risk if we tell them not to do it at all, and even one law suit could cost millions, so it's better all around to just say no."

That certainly doesn't explain all those individuals who don't seem to care, but there's a certain trickledown effect. If Company A says no and Company B says no and the RT doesn't have the initiative or time to understand why, they're going to say no, too.

So I think there are a lot of things that responsible individuals can do that companies have to say "no" to, simply because there are a lot of irresponsible individuals looking for a quick payday.

I do think there are those in healthcare with the god-complex, and that contributes, too, but I think that's decreasing as some of the older generation retires, but product liability has a lot to do with what we see in the market place.

Thank you, now I understand. You aren't against us looking at our data, you are just being realistic about WHY the companies are deciding they don't want us to do it anymore.

I look at it as analagous to a diabetic being told to test their sugar everyday but not be able to see what it is. To take their "download" to their doctor and not have them show much interest in seeing the results because they are "feeling fine." To give them a bloodtest once every year or even less frequently to "monitor" their progress.

If these companies have decided that we aren't allowed to see our data anymore then there needs to be a corresponding surge in interest of the dme's and doctors at downloading the cards and going over the data with us on a very regular basis.

Just like diabetes can easily change/worsen so can apnea and I for one want to be on top of it. And apnea can be so debilitating and wreak such havoc on our bodies, it seems irresponsible to not have SOMEBODY keep tabs on our daily trend data at the very least!

I recently took my smart card to my first (and last) appointment with my "sleep doctor." He didn't even acknowledge it was sitting on the table right next to him and I found out later they don't even have a card reader there in the office! This is irresponsible at best. I felt like he really didn't give a damn about how I was doing quite frankly. No questions about mask issues, nothing. Any info I got out of him was in answer to direct questioning. This is an illness in the "sleep world" and I intend to fight it! I don't know how yet, but I'll find a way.

They need to at least produce some kind of software for us that allows us to see SOME data. It is ridiculous to expect us to be treated "blind" without any idea of what is happening when we sleep. Some people go YEARS between sleep studies because of insurance probs. If you WANT to know, you should be able to know something useful about your treatment.

A diabetic at least knows that if his sugar was high that morning, he shouldn't eat that piece of cake that he is tempted to eat a small piece of.

We know maybe we shouldn't have had 6 beers the evening before when our AHI is thru the roof the next morning (just an example--I didn't do that!).

Jen



Jen

Great explanation Panhandler -- hadn't thought of that angle, but you are right -- there's no such thing as a "tragic accident" anymore.

For every action there must be a lawsuit.....
If you stub your toe on a walk around the block you have to sue everyone -- the city that is responsible for the sidewalk, the owner of the house in front of the sidewalk, even the county to be safe - and don't forget the person you were walking with, they must somehow be negligent in some way.
No such thing as "Oops. Need a bandaid" anymore...
Very sad state of reality we have brought ourselves to......

Your signature says it all:
Never attribute to malice what can be adequately explained by stupidity.

cheers
gg

Jen -- you're right on the money!!!!
(I'm also diabetic, so totally relate!!!)

cheers
gg

Panhandler wrote:

DreamStalker wrote:Why do you care whether we take control of our own treatment?

I think it's a legal liability issue.

I think this is giving the manufacturer's way too much credit. I think it has more to do with keeping their main customers, the DMEs and sleep clinics, happy so they can continue to charge a ridiculous fee just to read the data off of the card.

I have heard it said that the concern about having the software in the hands of the patient is that the patient can then change the settings on their machine. Well, anyone with fingers, a little perserverence, and access to a Web browser can find out how and change settings all they want. They don't need software to do that. And if that is the main concern then create a version without the capability to write to the card and sell THAT to patients.

I have also heard it said that developing new software is time-consuming and expensive. Well, that is true if you are adding features. If you are removing features it is easy as can be. Just remove the part of the interface, be it command buttons or menu items that access the feature, and call it good. If they are too sloppy to remove the underlying code, it is a pretty safe bet that the casual end user is not going to figure out a way around the missing interface options. And why would they go to the trouble anyway when, again, they can just use their fingers (Fingers 1.0, works with Vista, too) to change the settings. As another poster wrote, it is just a SQL database.

Let people view their own efficacy data so that they can make informed decisions about their treatment.

If someone can successfully sue a lawn mower manufacturer as Panhandler described then maybe someone should try suing Respironics for restricting access to their efficacy data (medical information) under the HIPPA rules. (Tongue in cheek)

Dave

I think the diabetes analogy is very relevant and appropriate, but I don't have much close experience with it. Are there diabetics out there who would confirm or argue with the analogy?

Another thing to note is that the medical community move VERY slowly to adapt to the market place and CPAP is a relatively new technology, in their time frame. As we continue to advocate for ourselves, we're helping to move the market in the direction we need.

I had what I thought was a productive email exchange with Respironics the other day, so I'm slightly encouraged. I'm also putting a lot of effort into educating the nurse practitioner who coordinates my OSA care.

Panhandler wrote:Maybe I didn't read back far enough, so the comment may not have been appropriate to the context, but we don't understand why the device manufacturers, the DMEs the RTs, the MDs are all so negative about us CPAPpers making changes in their decisions about how we should be treated.

Part of it, I'm convinced, is due to the legal liability issues they're faced with. If they knowingly make and sell a faulty product or make a bad decision due to some ignorance or lack of interest, there is, appropriately, legal recourse to sue and collect damages. But the system has become so warped that people sue and win and juries award damages for the most absurd things, and we get companies behaving defensively in the most absurd ways. For example, I bought a jar of peanuts the other day that had a warning label on it: "Caution: Contains peanuts."

Two guys picked up a running rotary lawn mower by the housing to trim a hedge, lost some fingers, sued the manufacturer because, "they didn't say we shouldn't" and WON. Absurd.

Consequently, the legal counselors for companies, malpractice insurers, etc. are advising a very cautious approach to everything. So the company winds up saying, in essence, "There's not much risk if people do this within certain parameters, but there's even less risk if we tell them not to do it at all, and even one law suit could cost millions, so it's better all around to just say no."

That certainly doesn't explain all those individuals who don't seem to care, but there's a certain trickledown effect. If Company A says no and Company B says no and the RT doesn't have the initiative or time to understand why, they're going to say no, too.

So I think there are a lot of things that responsible individuals can do that companies have to say "no" to, simply because there are a lot of irresponsible individuals looking for a quick payday.

I do think there are those in healthcare with the god-complex, and that contributes, too, but I think that's decreasing as some of the older generation retires, but product liability has a lot to do with what we see in the market place.

Hmmm ... that's like saying people should not be allowed to buy tools to work on their car because only mechanics should be allowed to work on cars ... or that people should not be allowed to buy lawn mowers because only professional yard workers should do that ... and while we are at it, people should not be allowed to buy cookware because only chefs should do the cooking ... where should we draw the line in order to starve out all of the the lawyers and put an end to sueing?

I'm not sure what kind of argument you're asking for about the diabetes analogy.
As a diabetic, I find Jen's analogy quite appropriate. It would be absurd to do blood glucose tests without knowing the results immediately. Any delay in the results would make them essentially meaningless. (I hope I haven't totally missed the point)....

Dreamstalkers comments are also excellent -- where do you draw the line??

I need to keep my soapbox neatly stowed away!!!!

cheers
gg

Sorry, Goose. I didn't express myself clearly. I was asking if there are flaws in the diabetes analogy that weren't evident because I don't know that area adequately. I take it that from your point of view, it's accurate, which is good, because the medical field can relate to it.

As to the lawyers, I don't know what we can do. As long as people figure that an accident or mishap is an opportunity for a quick buck, we're sunk.

FYI... I just purchased a copy of Encore Pro v1.8i at: http://www.directhomemedical.com/index- ... ducts.html

(Thanks to 6PtStar for noting this seller on 7/9/07)

Their site notes "Encore Pro Software & USB Card Reader". I received v1.8i (1.8.49), card reader, and separate driver CD for the card reader. I loaded the software last night with no issues and downloaded the data from my smartcard. Delivered price was $169.00

I don't have diabetes myself and I could be simplifying things, but I don't think the analogy holds true. Or maybe just trying to pick a fight .

The monitoring device provides the patient one number - their glucose level. And there is one response based on the results - adjust their insulin intake. Simple readout and known response.

Contrast this with the detailed data from Encore Pro. The patient needs to understand and interpret graphs and charts on OA, H, FL, NR, and VS. Plus leaks and APAP pressure. And what is the patients response to all this "input"? Change pressure? (CPAP? APAP? Min? Max?) Why mask leaks? (Mouth breathing? Bad seal?) Better equipment? (Machine? Mask?). If adjusting sleep therapy were as simple as diabetes monitoring, I don't think 80% of us would be on this forum. Maybe the better analogy is the machine providing your one number - average AHI. Which many machines already do without any software.

I do think software like Encore Pro should be available to patients who have the desire and acquired knowledge to use the information effectively. There are a lot of loaded words in that sentence that are hard to quantify. Even so, this is a very small minority in the "wild". Whenever I happen to discuss sleep disorder with people I meet or work with, I ask what machine they use and their pressure. A majority of them don't know or remember answers to these fundamental questions. I think it's these patients (not us) that Respironics wants to limit selling the software to. And I would almost have to agree. The software provides too much data for the average person and no interpretation of the results.

What to do? Make it hard for Joe Blow (<g>) to buy the software, but don't make it impossible for the rest of us.

Can anybody offer a different analogy in the medical field where a patient has access to their data that is usually only reserved for professionals? Analogies may abound in other areas of life and computers, but I emphasize medical field because of the high risk and inherent liability of the manufactures of the software/hardware.

SithLord wrote:I don't have diabetes myself and I could be simplifying things, but I don't think the analogy holds true. Or maybe just trying to pick a fight .

The monitoring device provides the patient one number - their glucose level. And there is one response based on the results - adjust their insulin intake. Simple readout and known response.

Figuring out your needs as far as diabetes is far from one test one shot. That's why you don't buy one test strip. Day to day, even minute to minute your body use changes. That's why if you can live without diabetes, give thanks for your blessings that your body can function on auto.

When you have diabetes, everything you eat and do affects your sugar levels. If it's bad, you have it use insulin, unlike air, there is a good chance for overdose, it's a little like trying to do pushups with a knife blade under your hand. The change you make in eating and insulin use aren't set in stone, even if you do the same thing all the time results differ.

XPAP, treatment or not won't kill you as quick, but in the end it does. It pays to take a proactive solution to your health, nomatter what you have going on. The medical profession sees us, when they need a car payment, bot when we have a problem, it pays to be informed and see yourself, we live in these bodies every day. Jim

I think this is giving the manufacturer's way too much credit. I think it has more to do with keeping their main customers, the DMEs and sleep clinics, happy so they can continue to charge a ridiculous fee just to read the data off of the card.

I think panhandler had it right, but you also have it right as well- DME's certainly aren't too upset about the fact that because of liability issues, they alone have ot monitor our data- As you say, they get repeat business because of it, so they aren't crying rivers of tears over this. It's just like hte health clinics now- the law states that you can't just get a perscription renewed anymore after 6 months without going for a 'check-up' (read, easy money for the docs), and to 'cover hteir buts agaisnt lawsuits' they now issue endless 'check-ups' or 'follow-up visits' where they make $100 a pop or more for taking 5 minutes to listen to your breathing, check your temp, and pulse and BP.

I've gotten to the point that I don't bother going back for 'follow-up' visits and won't go unless there is some need- it's a total waste of money and bilks the public out of tax dollars that could be better spent on other htings like research instead of lining a doctors pockets with easy money. Docs are loving the 'liability' issues that cause them to 'be more careful' by issuing endless follow-up visits- same with the DME's loving the 'liability issues' of patient Data, and having to shedule 'follow up visits' to check the patient data- easy money for them.

If there's any nurses or doctors here- sorry, I know htis makes it sound bad for Docs- but the fact is, they're not hte ones to blame- We the people are- always suing everyone for everything which causes all these litigation avoiding rules and regulations. It's sad that we the people so desperately want ot get rich quick by suing hard working people and ruining hteir lives in the process and ruining hte whole system for everyone else- the Encore Pro software regulations being a perfect example of what I'm talking about.

It's so bad, that police are now afraid to even use force to subdue anyone any more because they might get sued if somethign goes wrong or someone, heaven forbid, gets a scratch while they're trying to hurt hte officer.

OK, I'm done with my rant

Nazareth wrote:

I think this is giving the manufacturer's way too much credit. I think it has more to do with keeping their main customers, the DMEs and sleep clinics, happy so they can continue to charge a ridiculous fee just to read the data off of the card.

I think panhandler had it right, but you also have it right as well- DME's certainly aren't too upset about the fact that because of liability issues, they alone have ot monitor our data- As you say, they get repeat business because of it, so they aren't crying rivers of tears over this. It's just like hte health clinics now- the law states that you can't just get a perscription renewed anymore after 6 months without going for a 'check-up' (read, easy money for the docs), and to 'cover hteir buts agaisnt lawsuits' they now issue endless 'check-ups' or 'follow-up visits' where they make $100 a pop or more for taking 5 minutes to listen to your breathing, check your temp, and pulse and BP.

I've gotten to the point that I don't bother going back for 'follow-up' visits and won't go unless there is some need- it's a total waste of money and bilks the public out of tax dollars that could be better spent on other htings like research instead of lining a doctors pockets with easy money. Docs are loving the 'liability' issues that cause them to 'be more careful' by issuing endless follow-up visits- same with the DME's loving the 'liability issues' of patient Data, and having to shedule 'follow up visits' to check the patient data- easy money for them.

If there's any nurses or doctors here- sorry, I know htis makes it sound bad for Docs- but the fact is, they're not hte ones to blame- We the people are- always suing everyone for everything which causes all these litigation avoiding rules and regulations. It's sad that we the people so desperately want ot get rich quick by suing hard working people and ruining hteir lives in the process and ruining hte whole system for everyone else- the Encore Pro software regulations being a perfect example of what I'm talking about.

It's so bad, that police are now afraid to even use force to subdue anyone any more because they might get sued if somethign goes wrong or someone, heaven forbid, gets a scratch while they're trying to hurt hte officer.

OK, I'm done with my rant

I always thought it was the insurance industry that cashed in on the liability issues ... well ok I suppose the lawyers get a bite of that pie too.

Anyway, I'm still not convinced that the PAP software restrictions have anything to do with liability and instead have all to do with DME profits (IMO).