Should I be pissed or furious?

ohammersmith · Post by **ohammersmith** » Mon Jan 10, 2011 12:18 pm

So I went to the sleep study place I had my second study done. This was Nov 2008, so a while ago.

I had asked them for the data they had at the time but they balked. They gave me the summary report and annoyed me enough that I stopped caring about raw data.

I recently started to care about raw data, again.

Also, on principle. It's my effing medical records, give them to me. Also the first sleep study I had done in 2004, that place no longer exists and the data is somewhere (obviously) but I certainly don't have it and don't know how to get it. I don't want a repeat.

The soundbite goes something like this: "Just because you say the data isn't useful to anyone but the specialist doesn't mean a Dr 3 years from now won't disagree with you and your credentials don't trump theirs." Or something.

Also: Grr! It's mine! Gimmie.

So I had a free afternoon and decided I could spend it fighting red tape.

So I stopped in where I had it done. The tech said I should go to the office and it has moved, gives me directions. I head over, it's just down the street.

Forgot to mention, my wife had called them earlier in the week asking for it and never received a call back.

As I'm pulling up to the office, I get a phone call. It's them. Saying I need to sign a release *blah blah blah blah*... ok, fine, I'm right outside, I'll be right in.

Mind you, I *never* said what my name was to the tech. And they weren't just calling me back, because my wife would have left her number, not mine.

I'm guessing a frantic phone call of "angry patient... on his way... said you never called..." and someone figure out what happened, looked me up and called. a$$h0le$.

Anyway.

So the "release" they want me to sign is a standard release for providing your information to a 3rd party, say insurance or a lawyer or whatever.

Yes, they want me to sign a release to allow them to release my data to me. Sure CYA, whatever. I don't care. My spreadsheets are hungry and must be appeased.

*ahem*

Sign said release while commenting, "This does seem weird, doesn't it?"

They hand me the two-page summary.

"No, I mean the raw data."

This is the point in the conversation where things go a little weird and I feel like they're starting to lie to me. Their story just doesn't mesh up. One moment it's "we don't have that data" and the next breath is, "well it might be backed up somewhere but it's not on the server"...

I ask, you had it, at some point, right? I get that it's been 2 years, you may not have it any more. But how long would you have kept it? And if you might have it on back up, can you go look? You would have saved us both a lot of trouble if you hadn't been jackasses 2 years ago, in the first place.

Long story short, she's being unhelpful, downright un-truthful I will come to find out later, but I end up going back to talk to the tech.

He seems to genuinely want to help, but is between a rock and a hard place... the same kind of situation I've been in a lot. "The last guy" made some decisions that weren't so smart and "they" haven't decided to spend the money to clean up the mess.

Right after I had my study they switched software that runs the studies or whatever. The new stuff is all there, backed up, on the server, blah blah, but that wasn't my stuff.

Then he shows me the crashed hard drives "thats all the old data, we keep it, just in case". But "they" haven't decided to spend the thousands of dollars to send the drives out for forensic fixing.

He does offer, there is another backup. A bunch of un-labeled burned DVD's in a cabinet. Somewhere. Probably in the new office.

I don't even have to say, because it's clear at this point. I want him to look. He offers to let me help. Really? Okay.

So an hour later, after flipping through a bunch of CDs and DVDs, mostly labeled, some not, and not in any particular order I have nothing. There was one labeled on the right date, but it wasn't me. There was a Finding Nemo DVD, though. I think someone is trying to tell me something.

At this point my status is about:

These are the problems I see:
[*] Backup strategy is shit, and if there are medicare patients in there they're in deep doo doo. They're supposed to keep that stuff for six years. Maybe it's better now, maybe it's not. Maybe the summary stuff is good enough, but if it is, they could run one heckuva scam if they wanted because there is no proof that any study actually took place.
[*] You let me do what now? HIPAA violation, much? Also, I need to mention, again, I never told these jackasses my name much less showed ID.
[*] I still have no raw data. Gr.
[*] You won't spend $x,xxx to repair the backup drives, which is less than $y,yyy one study fee, why now? It's the price of doing business, fix the backup and eat the loss. They're clearly ignoring the problem until the clock runs out and it doesn't matter anymore.

So I'm mad. I know I should be that much.

What I don't know is if I should be off my rocker insane-o mad to the point where I go tattle-tale to the Feds.

I mean, clearly this is an issue, but maybe I'm out of line and just offended for other people... it's easier to get offended for someone else than it is for ones own self.

Thoughts?

Pre-apologies for the long rant.

SleepingUgly · Post by **SleepingUgly** » Mon Jan 10, 2011 12:41 pm

About 7 or 8 years after a sleep study, I tried to get the raw data (the graphs on CD). They had converted from one type of computer system to another in the interim, so they couldn't give it to me. I figured it was not so important given how long it had been, so I dropped it. When I had my last sleep study, I asked for the raw data on CD, although the format seems to make it very difficult for other doctors to read. One succeeded and another one couldn't.

In the olden days, they used to have data on paper. I once had a doctor request the data from a previous sleep study and a big box with reams of computer paper arrived and she read through it (wish I hadn't had to move away from THAT doctor!).

That's my experience, for what it's worth.

jnk · Post by **jnk** » Mon Jan 10, 2011 1:00 pm

Re: Should I be pissed or furious?

Which is worse?

I have no desire to have the "raw data," myself. But I did want the full sleep-study report (which for me was about eight or nine pages) not just the summary report (two pages). I wanted to see the charts showing which pressures were tried during titration and my sleep positions and the like. The way I got that was to ask my primary-care doc to ask for it for HIS files, since he had referred me to the lab. Once my primary-care doc had the full report, I asked HIS office staff to run me off a photocopy of it.

I'm not sure all sleep docs everywhere even do full reports, though.

GumbyCT · Post by **GumbyCT** » Mon Jan 10, 2011 1:38 pm

ohammersmith do you live in CT?
That story sounds strangely similar to Gaylord Sleep Medicine. They will try to convince you that HIPAA is to prevent you from ever seeing your medical records.

When those before you turned their head the other way this is the kind of treatment that results.

jnk · Post by **jnk** » Mon Jan 10, 2011 2:12 pm

The sad thing is that often the only patients who ask for those kinds of medical records are the patients who are about to sue, so medical people tend to start circling the wagons when they think someone is gathering ammunition to attack them with. It can help if we explain why we are asking--that we want to learn about our condition so we can be informed, educated patients. If you ask for someone to go over your sleep study with you, for example, that gives some hint what you have in mind. If they think they are under attack, they will wait to hear from your lawyer, just on principle.

A lot of offices think that the only reason they keep records is to prove things to insurance, and things get stated a certain way in records for that reason. It can help to work with them on that assumption, even though it is wrong. Just be firm and polite. If I put myself in their position, I would hesitate to hand out raw data, too. No two people interpret the raw data the same way, and no one likes to be second-guessed. After all, they may have fudged some of the data in order to get insurance to pay for what you needed at the time.

What would you do with the raw data anyway? Do you have a way to read it? Just curious.

ohammersmith · Post by **ohammersmith** » Mon Jan 10, 2011 3:54 pm

GumbyCT wrote:ohammersmith do you live in CT?

Nope, North Carolina.

Naturally, names removed to protect the guilty. For now.

I'm seriously leaning toward the nuclear option of calling in the Feds. I want to make it look like that scene from E.T. up in here with all the G-men.

To quote a Physiologist buddy of mine, "They could go to prison, for that."

ohammersmith · Post by **ohammersmith** » Mon Jan 10, 2011 3:58 pm

jnk wrote:
Re: Should I be pissed or furious?
Which is worse?

I have no desire to have the "raw data," myself. But I did want the full sleep-study report (which for me was about eight or nine pages) not just the summary report (two pages). I wanted to see the charts showing which pressures were tried during titration and my sleep positions and the like. The way I got that was to ask my primary-care doc to ask for it for HIS files, since he had referred me to the lab. Once my primary-care doc had the full report, I asked HIS office staff to run me off a photocopy of it.

I'm not sure all sleep docs everywhere even do full reports, though.

Yeah, my PCP didn't get a full report. And the sleep study joint at the time claimed he didn't need it.

I ended up with a specialist after a few years, I think she may have it, but their office is stuck in pre-internet days and it's hard to explain over the phone exactly what I want. Her receptionist was very helpful in saying they would photocopy all that at my next appointment. *sigh* Soon enough, though. In a couple weeks. I'll see what I have.

ohammersmith · Post by **ohammersmith** » Mon Jan 10, 2011 4:09 pm

jnk wrote:The sad thing is that often the only patients who ask for those kinds of medical records are the patients who are about to sue, so medical people tend to start circling the wagons when they think someone is gathering ammunition to attack them with. It can help if we explain why we are asking--that we want to learn about our condition so we can be informed, educated patients. If you ask for someone to go over your sleep study with you, for example, that gives some hint what you have in mind. If they think they are under attack, they will wait to hear from your lawyer, just on principle.

Yeah, I've seen the circling behavior, first hand. My wife's PCP kicked us to lawyers when we were having ours get medical records from an accident. It didn't stop things, just slowed stuff down... we had to be like "we're not trying to sue *you*, we're trying to get the person who totaled our car to pay for the stuff *you* had to fix"

I think, in this case, they're clearly "under attack". They don't want anyone to find out and send them to federal-pound-me-in-the-a$$-prison, to quote Office Space.

jnk wrote:
What would you do with the raw data anyway? Do you have a way to read it? Just curious.

For starters, "Keep better track of it than they have."

I've lost two studies now because they appear to shady record keeping processes. This is data I paid thousands of dollars to collect. Gone. Who knows why it might be useful. Maybe it's not useful to me, but maybe it's useful in 5 years to a new doc because there's some new technique or other for understanding something. Seems like a small thing to keep a DVD in a filing cabinet, just in case. I certainly have a lot of junk less likely to be of use than that.

Second, though, I really was curious what kind of leak rate they were seeing during the study. I mean, I've seen I can get my mask to not leak, but I was curious if the Quattro was better. And since my old CPAP had no data logging capabilities my options are "buy a new quattro", which is either out-of-pocket or on the next insurance cycle... and if it doesn't work out, I get to wait. I figured they had real data of my results using a quattro mask. *shrug*

I figure I have three options.

1. Forget it and move on.
2. Call for a status update on finding my records. Daily. And just annoy the bejesus out of them until they hire a temp to catalog the DVDs.. it seriously wouldn't take that long. Hell don't hire a temp, just don't watch Finding Nemo so much during the night. (*argh*)
3. Get lawyers and feds involved and rain fire down upon them.

I've done #1 before and it never turns out well so I'm reluctant to ignore it.

I don't really have the time to be babysitting someone who oughta be doing their jobs so #2 is really a poor choice.

#3 seems like an overreaction, but maybe it really is appropriate considering how they've treated their customers medical records.

ohammersmith · Post by **ohammersmith** » Mon Jan 10, 2011 4:14 pm

Huh, I just thought of option #4.

A nicely worded dead-tree letter to the Director of the facility, the guy with the MD and medical license.

Explain how their data retention practices are out of line and their treatment of their customers is unacceptable

Cc'd to my physicians.

Bcc'd to the insurance companies.

Sounds like a plan, no?

kteague · Post by **kteague** » Mon Jan 10, 2011 4:51 pm

In a perfect world...

If you find that place, let me know. Ideally old records would be readily retrievable upon your request. Write the letter if you feel it merits that action. I've written a few in my life. If you have a difficult OSA case that is not responding to treatment and these records could make a difference in your life, I can see pushing the issue. We all have to pick our battles based on their value in our own estimation. Seems lately I don't find very many causes worth the price I have pay in having it possess my head and heart during the battle.

Marvinvwinkle · Post by **Marvinvwinkle** » Mon Jan 10, 2011 5:00 pm

Actually, I was thinking that you should be furiously pissed, but that's just me. I also had the same issue with my last sleep study. The only way I got any info was from my DME and he was real hesitant to give me a copy. He only did it after he understood that I wasn't going to buy his machine, If I didn't get it. I also had to agree to take a copy to my PCP, because the study was not sent to him. I don't know about you but I have never seen the sleep study Dr. You would think they would want to go over the results instead of letting the DME explain it.

bap40 · Post by **bap40** » Mon Jan 10, 2011 5:22 pm

I have to jump in with my 2c worth. From the sounds of that place I am not surprised the wagons are circling. They need someone to breach that circle and make things right! Who knows what else is or is not being done by the book? The employees seem to know this also. Maybe the employees are walking on eggshells themselves waiting for the ax to fall and would be grateful to have their employer follow the rules.

chunkyfrog · Post by **chunkyfrog** » Mon Jan 10, 2011 5:27 pm

I only got the 2 or 3 page summaries of my sleep studies from the sleep lab.
I never asked for more.
I took one night's detailed report from ResScan in to see my pulmonologist--first appointment.
Wow--this guy really paid attention; he answered my questions about my readings.
He said I was his first patient to ask for a prescription for a recording pulse-ox--and wrote it right away.
I think I'm going to like this guy.

jazzer4 · Post by **jazzer4** » Mon Jan 10, 2011 5:54 pm

0hammersmith

If you want to know how the quattro will work for you instead of buying one or waiting for your next insurance go-round, why not just contact Dana at http://www.sleepnation.tv/
He has started a loan program. You can request the mask you want to try...pay &7.00 postage and I think you get to try it for a week. If you don't like it mail it back.
He has lots of different mask to "TRY".
Others here on the forum have used this new program. I've not been told anything bad about it.
Maybe do a search here on the forum for more info.

I understand your frustration but perhaps this would solve one of your quarries.

HoseCrusher · Post by **HoseCrusher** » Mon Jan 10, 2011 6:00 pm

I asked for my raw data and was told that it was too much to "conveniently" provide, and since I didn't have the software to view it, it would be useless to me. I settled for the summary report.

Mask	Humidifier

Mask	Humidifier

Mask	Humidifier

Mask	Humidifier