"Patients Crusade For Access To Their Medical Device Data"

[secret agent girl]

For whatever it's worth to you...

Report by NPR...baby steps, but awareness is the beginning of change:
http://www.npr.org/blogs/health/2012/05 ... s=sh_sthdl

TED Talk by a patient making the case we have a right to our medical data:
http://www.tedxcambridge.com/thrive/hugo-campos/

Another version of the argument "for"--civil rights style song:
https://www.youtube.com/watch?v=xR26uP4X9kE

[JohnBFisher]

Welcome back, SAG! Hope you are doing well.

As to the "access to the medical device data", I explain it by comparing it to diabetes. Both sleep apnea and diabetes are chronic disorders. That is, for almost everyone it is true that you don't ever get "over them". There is a statistically insignificant number of diabetics and folks with sleep apnea who do "get over" it, but most of the rest of us must deal with it the rest of our lives.

And just like diabetes, the health risks are huge. In fact, sleep apnea is now known to lead to diabetes, cardiac problems, strokes, chronic high blood pressure, and damage that can cause, such as kidney failure. And that completely ignores the fact that sleepy drivers account for an estimated 10 percent of all accidents and fatalities (the reporting statistics on sleep deprived drivers is not standardized, so the estimates are all over the place). There is no doubt (based on all the studies that I've seen) that sleep apnea poses an adverse effect on your health ... unless there is effective therapy to manage the condition.

A diabetic needs to check their blood glucose levels at least daily. Those diabetics that take insulin typically need to check their blood glucose levels at least when they take their insulin. The more severe the diabetes, the more the diabetic should monitor their blood glucose levels.

And as my endocrinologist noted he does not need the blood glucose data. I am the one - as the diabetic - who needs the blood glucose data. With that data, I can determine (a) my current blood glucose, (b) based on my last meal / snack .. what might have caused it to spike. I can then use it to help manage my behavior and try to keep my blood glucose within a healthy range.

Additionally, as a diabetic, I am told to monitor other factors, such as my Cholestrol, my hemoglobin A1c value, etc. The point is that due to the diabetes, I must not monitor and manage my health. Not my doctors. They don't need the data. I do. I need it to manage my therapy.

So, as a diabetic, I need the data to be certain that what was once automatic is now well managed. That will help improve my health more than many other things that I can do.

So it is with the xPAP therapy data. By tracking my data, I can determine if my poor sleep was due to an unusually high number of apneas. I can see if a leaky mask was the problem. I can see if I have a huge number of hypopneas. I will know to go to my doctor when I have problems. What's more, when I go to him, I can show him DATA. That will either concur or refute how I FEEL. How I FEEL is very subjective. To be effective, I need objective data. It's not from a full sleep study, but it allows us to quickly focus on a certain area .. and not need to fish about trying to find the problem.

Anyway, that's my two cents worth on this ...

[Julie]

Good find!

The don't ask/don't tell attitude toward patients is pervasive amongst doctors (and therefore nurses, techs, etc.) because they're so afraid patients will misunderstand something and freak out, bother the doctors, move into the ER's, do something radical(?.!!) and spread misinformation...

But why don't the doctors take 10 minutes to simply explain things in the first place? Obviously there will be patients who are not really great candidates for any kind of explanation - already demented, dysfunctional memories, documented as so deranged as to make things a waste of time, but in fact small children with serious diagnoses can usually tell you all about their conditions - in medical language, so why on earth couldn't the majority of adults learn how to read and interpret their own data coming from (usually) just one small machine they use daily?

You don't necessarily need to understand every mathematical aspect of how each number is arrived at, but the concepts of whether they are too high or too low, and their relative relationship to each... those things are not rocket science but can at least tell people if they're more or less OK on a given day, or whether to possibly get some help if they need it. Most of us work or have worked in jobs that require all kinds of knowledge, not 4 yr courses in every facet, but certainly enough to make intelligent choices about things... why not our very own bodies?!

[JohnBFisher]

Julie, I'm not making excuses, but you would be surprised at how few people are good at teaching. All too many doctors learn the concepts, but few of them are then good at teaching the concepts in an approachable manner. Still, as with diabetes, patient education should occur. Some DMEs do this. Some doctors practices do this. Adding the management of data should be an extra piece they add to the teaching.

[deltadave]

To Campos, that's not the point. "Whether I can make sense of it or not, it's another problem. I should be allowed at least to have a chance to look at this data and see if I can make sense of it," he says.

Well, "IMHO", if he can't figure out how to find and install the torrent for CareLink Pro 3.0 (the software package he's looking for) he doesn't stand a snowball's chance of being able to interpret any data he might find.

[BlackSpinner]

To Campos, that's not the point. "Whether I can make sense of it or not, it's another problem. I should be allowed at least to have a chance to look at this data and see if I can make sense of it," he says.

Well, "IMHO", if he can't figure out how to find and install the torrent for CareLink Pro 3.0 (the software package he's looking for) he doesn't stand a snowball's chance of being able to interpret any data he might find.

No but he can get help to understand it. He could turn to his local teenager to get the software installed, he could turn to the internet to get definitions and to his brother-in-law's aunt's daughter's boyfriend to get the details explained.

[deltadave]

...and to his brother-in-law's aunt's daughter's boyfriend to get the details explained.

Good point. And I suppose I should be helping instead of hindering.

Here's the downloadable parameters for a popular Medtronics ICD. Starts on page 406.

http://manuals.medtronic.com/wcm/groups ... 120376.pdf

[info junky]

(quote)Campos has to make an appointment and ask for a printout. And that, he says, just doesn't seem fair./quote

he can just submit a hipaa request in writing for this data if it is in his medical records i would just make copies of the request and fill in the dates each week or month

[49er]

I think it is disgraceful that the major manufacturers of the machines act like we shouldn't be accessing our data. First of all, I spent $600 plus dollars for my machine and accessories and Devilbiss refers to me as the patient in its software. Uh no, I am a customer of your products who wants to take an active part in my healthcare. Start treat us that way just like the folks who make the diabetes products treat their customers.

To the Devilbiss rep, DMEs, and related personnel who monitor this forum, it is time for this patronizing garbage to come to an end.

49er

[BlackSpinner]

(quote)Campos has to make an appointment and ask for a printout. And that, he says, just doesn't seem fair./quote

he can just submit a hipaa request in writing for this data if it is in his medical records i would just make copies of the request and fill in the dates each week or month

Ha I would like to see everyone do this. The data would be available in no time. Just imagine everyone walking into their DME's with those every week? Why don't you guys pick a week - say during a particular official health month and coordinate to ALL go and do this! (You could bang pots while waiting too.)

[Drowsy Dancer]

Just imagine everyone walking into their DME's with those every week?

Were you thinking of "Alice's Restaurant" when you wrote this line?

It looks there are ICD forums. I bet Campos is active on them and surprised the article didn't mention forums.

NPR did do an article about people with rare diseases finding one another online: http://www.npr.org/blogs/health/2012/05 ... h_stcathdl

But what about less rare conditions? Like apnea, for example.

[Julie]

John Fisher - I absolutely agree with you and it may be the reason (apart from their precious time ) why doctors have nurses train patients in how to use diabetic equipment, and how to read results... I wasn't being that literal, but the point is to get patients the info they need and some way to understand the basics.

[NateS]

Just imagine everyone walking into their DME's with those every week?

Were you thinking of "Alice's Restaurant" when you wrote this line?

And three people do it, three, can you imagine, three people walking in
singin a bar of Alice's Restaurant and walking out. They may think it's an
organization. And can you, can you imagine fifty people a day,I said
fifty people a day walking in singin a bar of Alice's Restaurant and
walking out. And friends they may thinks it's a movement.

http://www.arlo.net/resources/lyrics/alices.shtml

Nate

[BlackSpinner]

Just imagine everyone walking into their DME's with those every week?

Were you thinking of "Alice's Restaurant" when you wrote this line?

Umm err what? No?

Actually I was thinking of the bank change thing where people pulled their money out of the big banks and put it in the smaller local banks last year.