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How do the manufacturers feel about giving us data access?
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Paptillian Offline

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Post: #1
How do the manufacturers feel about giving us data access?
Curious what the current trends are regarding manufacturers being on-board with patient empowerment and helping us to have access to and understand our sleep data.

I know that several xPAP makers have their own respective software that allows clinicians to view and analyze detailed data. Some have made their software available to patients, at least for the current generation of machines. We have SleepyHead (an independent, free software), too, but it's only as good as the data that the machines provide and our ability to parse the proprietary data formats. It's also only as good as someone with the appropriate knowledge and access to information is willing to continue working on it for free Wink

Lately some makers have indicated that they wish patients to use much more simplified tracking software which only gives basic information as compliance and leaks. A couple examples are the SleepMapper app from Respironics and SleepSeeker from ResMed.

Do you see this as a continuing trend to keep clinical data in the hands of the doctors and DMEs, or do you feel that the next generation of devices will bring more pathways to patient empowerment and control of our data?
(This post was last modified: 07-25-2013 06:24 PM by Paptillian.)
07-24-2013 10:22 PM
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Paptillian Offline

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Post: #2
RE: How do the manufacturers feel about giving us data access?
By the way: SleepyHead is worth a donation! So is this forum!

Big Grin
07-24-2013 10:29 PM
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big_dave Offline

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Post: #3
RE: How do the manufacturers feel about giving us data access?
A dev on another board is working on an app to display data from a PR machine on his iPhone, and has successfully transferred data. Maybe we'll see a Sleepyhead port soon.
(This post was last modified: 07-25-2013 12:00 AM by big_dave.)
07-24-2013 11:59 PM
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archangle Online
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Post: #4
RE: How do the manufacturers feel about giving us data access?
I think the manufacturers know that the medical mafia controls the purse strings. Many of the doctors, DMEs, and other healthcare organizations would prefer that the patient not be able to access data or settings on their machines, and stay completely dependent on the medical mafia.

The only reason we have any access is that the DMEs have too much trouble keeping up to date on specialized tools like computer programs that are needed if the manufacturer put a better "lock" on the settings and data.

Given the evil trends of locking everything down led by Apple and smart phone apps, I expect that future machines will be more and more locked up so the user can't tread on the medical mafia's turf.

Get the free SleepyHead software here.
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07-25-2013 03:36 AM
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PaulaO2 Offline
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Post: #5
RE: How do the manufacturers feel about giving us data access?
Easy to answer that, Pap.

Is there a good, usable software readily available to the actual user that is developed for use by the user?

Um, no.

ResScan is designed for the supplier. Yes, we have access to it, but it's entire being is to monitor compliance hours. The rest is just added on for giggles. And we have to maintain a tight line of obedience to keep it available here.

From what I understand, the Encore Viewer is rather useless. Sure, it has some good points but....

The Icon has some software but it costs. Heaven forbid that after paying for an expensive piece of equipment that software to make the machine work optimally would come free. Sheesh.

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
07-25-2013 12:28 PM
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RonWessels Offline

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Post: #6
RE: How do the manufacturers feel about giving us data access?
I thought EncoreViewer was for Respironics as ResScan was for ResMed. Given that they charge $100 for it, I would hope that EncoreViewer is at least comparable to ResScan and SleepyHead.

Or are you thinking of SleepMapper (that web monstrosity that Respironics is trying to pawn off as the patient version of EncoreViewer)?
07-25-2013 02:34 PM
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RonWessels Offline

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Post: #7
RE: How do the manufacturers feel about giving us data access?
To address Paptillion's original question, I can relate a story about wireless routers. When it first came out, the Linksys WRT54G was _the_ wireless router to buy. Primary among its advantages was the fact that it was implemented as an embedded Linux platform. Not too long after it's arrival, people figured out how to generate their own firmware for the device, and third-party firmware for wireless routers was born. As you might expect, the third party firmware very quickly out-shone the Linksys offering, as bugs were fixed and new features added.

Eventually, Linksys decided to re-design the WRT54G using VxWorks (a proprietary real-time OS) to be able to use smaller memory and flash chips. However, there was a sufficient hue and cry in the marketplace from the small and obscure 3rd party firmware users that Linksys introduced the WRT54GL, the Linux version of the WRT54G (ie. the older design). And yes, it did well enough in the marketplace to justify its manufacturing. Even now, Linux-based modern wireless routers are still available on the market (and command a premium price over non-Linux routers).

So you see that it is possible for a small obscure group of users to influence what manufacturers produce.

The fact is that there are already data-capable and brick versions of machines in the market. I can't see this changing anytime soon. And I can't see the manufacturers investing _any_ time at all attempting to encrypt the usage data, so people will always be able to figure out the data format on those SD cards and update programs like SleepyHead.
07-25-2013 02:47 PM
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Sleepster Offline
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Post: #8
RE: How do the manufacturers feel about giving us data access?
(07-25-2013 02:34 PM)RonWessels Wrote:  I thought EncoreViewer was for Respironics as ResScan was for ResMed. Given that they charge $100 for it, I would hope that EncoreViewer is at least comparable to ResScan and SleepyHead.

EncoreViewer or EncoreBasic are essentially the same and although they are useful, on a scale 1 to 10 I'd give them a 1. I understand ResScan is a bit better, and I know SleepyHead is far better.

However, the development of SleepyHead has been essentially dormant since the author's life circumstances somehow changed a year or so ago. I've heard of people complaining that their donations to SleepyHead are now money wasted.

SleepyHead has some problems with Respironics BiPAP's. And SleepyHead has not been updated for use on the Mac for all the newer Respironics machines (both BiPAP and REMstar).

I have a Respironics BiPAP and I use both EncoreBasic and SleepyHead, although I now check my data only once per month. I usually use SleepyHead to view the data, and then generate and print a one-page summary report using EncoreBasic.

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
07-25-2013 06:36 PM
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Paptillian Offline

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Post: #9
RE: How do the manufacturers feel about giving us data access?
Sounds like the consensus is that the detailed data isn't there for us (the patients), so there isn't much expectation that it'll get better.

To archangle's point, I can see how the healthcare side of things makes this worse for us. It's a shame. Patients need to take charge of their treatment and demand data from their medical devices.

Ron, I think your analogy underlines a critical fact: we are the "tech geek" minority of the xPAP users. These simplistic apps such as SleepMapper just highlight the fact that most patients don't know better or don't want to invest the time and effort. They just want a red or green status light. "Is my treatment working?"

I believe that we're also fighting an uphill battle with regard to awareness of sleep quality issues and the importance of staying on top of it. I hope that as awareness grows so too will demand for sleep data. This is one of the reasons I think Zeo went out of business.

Paula, I applaud Fisher & Paykel for thinking to provide software to us even at a cost. I would expect it from a company that has its roots in consumer appliances. If they could sell me a software package for my dishwasher or refrigerator I'm sure they would Laugh-a-lot

Although free is better. I agree that it could be free with purchase of a CPAP since the machines are so costly. I looked at the spec sheet on their website and the software seems more basic than what ResScan or SleepyHead provide.


----

(BTW, Ron, nice analogy... I still have a WRT54G that's served well for years, though I've replaced it with an Asus RT-N66U after discovering that the WRT54G had a WAN-side speed cap of about 24Mbps in my own testing. It was bottlenecking my broadband, so it was time to go. I'm going to give it to my parents and set them up with WiFi.)
(This post was last modified: 07-25-2013 08:56 PM by Paptillian.)
07-25-2013 08:55 PM
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OMyMyOHellYes Online

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Post: #10
RE: How do the manufacturers feel about giving us data access?
"manufacturers feel..."

That's just funny. I don't care who you are.

OMyMy
07-26-2013 12:23 PM
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