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[cancer] Adventures in the allegedly best healthcare system in the world - Lakeshore
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Jay Lake
Date: 2012-09-07 03:53
Subject: [cancer] Adventures in the allegedly best healthcare system in the world
Security: Public
Tags:cancer, health, personal
I spent a great deal of yesterday deeply distracted, profoundly stressed and extremely frustrated. The problem was getting my medical records transferred from Oregon Health Sciences University (OHSU), my 'home' hospital, where I am treated at the Knight Cancer Institute, to the Johns Hopkins Hospital (JHH), where my second opinion consults today and Monday are at the Kimmel Cancer Center.

That turned out to be an absolute nightmare.

Bear in mind that I have very good health coverage (in terms of US health insurance). I am a capable businessperson who takes good call notes, knows how to speak professionally to people even when I am under extreme stress, and has long experience in navigating complex corporate systems and policies, as well as specifically with being a cancer patient. In other words, I am well supplied with experience and skills to deal with this.

The problem appears to be systemic rather than any individual misperformance. Nonetheless, this was a comedy of errors which rapidly approached a deep problem for me as I prepared for my second opinion consultation with a medical oncologist at JHH. It went something like this:

On August 17th, I spoke to a staff member in OHSU's Medical Correspondece office, that handles patient records transfers. I requested release of my records to JHH. I detailed the treating physicians, as I have had four of them over 4.5 years of living with Stage IV colon cancer with multiple metastatic presentations. I was assured they had all the information they needed, and everything would be taken care of.

On September 5th, i spoke to a staff member at the Kimmel Cancer Center (they are a patient intake specialist) to confirm all required material had been received. After assuring me that if anything were missing they would have let me know, they double checked at my insistence. JHH had case notes from one of my doctors, nothing from the other three.

That same day I called back and spoke to Medical Correspondence at OHSU again. Asked them to resend for my other three doctors.

Late in the afternoon I tried unsuccessfully to reach my contact at JHH to confirm receipt.

Yesterday morning, September 6th, I finally reached JHH, who informed me that they had received partial notes from a second doctor, and none from the remaining two.

I called back to OHSU Medical Correspondence and spoke to another staff member. They quite incidentally asked me which month this year I'd been seen in by these other doctors whose records were missing. When I said these records went back to 2008, the staffer was surprised. They then said they would take care of it.

OHSU then called me back to tell me that they could not get the faxes to go through to JHH. Something seemed to be wrong with the receiving fax machine.

I then spent several hours trying to coordinate communication directly between OHSU and JHH rather than playing operator to a series of failed communication attempts. I offered to have the records faxed to my virtual fax number, where I would receive them as .pdf files and could forward them on to JHH via email, but was told that individuals cannot receive patient record faxes. Not even me for my own records. (This is in direct contravention to both stated OHSU policy and Oregon state law, by the way.)

At that point, I was in a panic. If the medical records, including surgery reports and case notes, did not go through, my entire trip to Baltimore for the second opinion would be largely wasted.

As the day went on, I made and received another half dozen phone calls. OHSU and JHH had finally spoken directly. A new fax number was provided. Another incomplete fax was sent. I was forced again to mediate between the two hospitals. Eventually, all the records went through, though receiving even confirmation of that was difficult.

Some observations about all this, speaking in my professional capacity as a business process and business communications analyst:

  1. OHSU's process is broken. When I made my initial records request I was never asked for the date range of treatment. In assuming same-year only, OHSU creates a problem for patients with long-term courses of treatment. I did not know to inquire about the date ranges, and it's not an obvious question for a layman to think to raise.


  2. OHSU's process is further broken in that they cannot detect when they have sent an incomplete fax transmission. As delivered page count is readily available within facsimile transmission protocols, this means there's no functional monitoring in place.


  3. JHH's process is broken in that their error checking with respect to records availability failed. Further, that error check failure was not noticed until I pushed the issue.


  4. JHH's process is further broken in that their fax machine (or more likely, electronic fax board) associated with such a critical path function was defective, apparently without anyone noticing it. This means there's no functional monitoring in place.


  5. As a patient, it is virtually impossible for me to facilitate direct communication between OHSU and JHH due to the widespread use of voicemail boxes and callbacks. This meant I had to play 'operator' and lose several hours or half a day or more to each failure point in the process.


  6. OHSU's lack of willingness to directly send me my own records in contravention to both their own published policies and Oregon state law made a swift, simple solution to the problem impossible. Another process failure, and possibly an audit and accountability failure within OHSU's own organization.


  7. The failure of both institutions to either properly implement the 30-year-old technology of fax machines and transmission monitoring, or to implement in any way the 20-year-old technology of electronic records transmission, which in either case would sidestep many of these legacy issues and significantly reduce the latency in the records transmission process, allowing swifter error detection and prompt resolution.


I was almost in the position of having wasted an enormous amount of time and money trying to buy myself an extra year or two of life with outside experts consulting on my late stage cancer, because OHSU could not fax a set of documents to JHH. Neither entity was capable of performing simple, proven error detection at the functional telecommunications layer. Neither entity was capable of performing simple error correction at the business layer on their own initiative. Resolving this situation required well over a dozen intervening phone calls from me personally, at a time when I am already very, very stressed by the fourth presentation of my cancer.

Someone without my business and communication skills would have been at a dead loss, and found their trip for the second opinion wasted. Someone with my skills who simply hadn't followed up in the absence of news to the good or bad would have likewise been at a dead loss, trip wasted.

And this is merely one small part of the incredibly complex process that I have to go through as a cancer patient. This is what our medical system asks of people in their times of deepest need and highest stress. Finicky compliance, constant vigilance, and that the patient or their family have the freedom and flexibility and cognitive functionality to cope with technically trivial and highly avoidable process errors.

If you think our American healthcare system is the best in the world, try being seriously ill. While I have only very minor complaints about my quality of care at the delivery end, the business, administrative and financial wrappers around that delivery are onerous, punitive and bizarre, on their best days.

How do people who don't have advanced educations, business experience and good communications skills do this? How many people die every year in this country because they simply can't comply with the Byzantine requirements of the healthcare system? Do you seriously believe we don't need healthcare reform in the United States? My experience is not an exception case, it is the norm, even for someone with good insurance coverage and strong life skills.

It's bad enough that I'm sick with a disease that will almost certainly kill me. What I have to go through to receive treatment is a disgrace. And I am one of the lucky ones at that,

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Larry Sanderson
User: lsanderson
Date: 2012-09-07 11:20 (UTC)
Subject: Oh My!
If only we all had vouchers! What a sweet world it would will be.

It's too bad there's no way to electronically transfer records...
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Gary Emenitove
User: garyomaha
Date: 2012-09-07 11:36 (UTC)
Subject: (no subject)
Have you considered sending this information to the White House? Not that they don't know about this going on, but you express the points so well.
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russ: quo vadis
User: goulo
Date: 2012-09-07 12:32 (UTC)
Subject: (no subject)
Keyword:quo vadis
Or sending it as an article or editorial to various newspapers or other periodicals or websites.
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scarlettina: Fountain of smart
User: scarlettina
Date: 2012-09-07 14:06 (UTC)
Subject: (no subject)
Keyword:Fountain of smart
This was my immediate thought as well. This is exactly the sort of thing that illustrates the desperate need for reform. I strongly endorse this idea. Also? Their not releasing your medical record is some kind of crap. Legally those records are yours; they belong to you. Make a stink.

Edited at 2012-09-07 02:09 pm (UTC)
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joycemocha
User: joycemocha
Date: 2012-09-07 13:48 (UTC)
Subject: (no subject)
Absolutely second what Beth says. OHSU has been the thousand pound gorilla in the state for too many years with regard to certain funding issues, and they should damn well be accountable records-wise. Just reading all this makes me shudder. Kaiser is complicated enough, and their protocols are allegedly more coordinated than OHSU in PDX. As it is, anyone involved with the Oregon public employee healthcare pool risks yearly whipsaws every enrollment period if they aren't on Kaiser because of the changablility of the plans and doctor memberships in various insurance groups. Part of what our union has to do at times is assist retired members with insurance issues, as well as work with the district to determine what plans that the OEIB comes up with provide the most coverage for the best price. It's a nightmare. This year alone we had to revisit and reapprove plans right up to the open enrollment period because things kept changing. And that's not even the provision of records.

Before she died, my friend with lung cancer was wrestling with these issues to the degree that she'd asked me to be her patient advocate. The doctor wouldn't release her lab results directly to her so she could change doctors, and he drug his feet about releasing results directly to the other doctor. As she said, "I'm paying for these results, they're mine. I should have ready access to them." Grrr. And I've run into similar records issues in my capacity as a special ed teacher, because even with HIPPA releases, some offices interpret the age standards as reading that even 13 year olds can overrule their parents about releasing records that affect special ed eligibility. I almost think this records business is a deliberate systemic failure using HIPPA regulations as an excuse.
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threeoutside
User: threeoutside
Date: 2012-09-07 15:44 (UTC)
Subject: (no subject)
I think a copy to each Congressperson and Senator would also be instructive - maybe to every Congressional and Senate committee with health system oversight, too. Should Jay have to do that? No. He shouldn't have had to go through this malarkey in the first place, if the "health system" was really about patient care.

I spit in the face of anyone who has the gall to talk to me about "death panels." We already have them - they're the health bureaucracy.
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Kari Sperring
User: la_marquise_de_
Date: 2012-09-07 12:23 (UTC)
Subject: (no subject)
Oh, ffs. That's deeply, deeply rubbish.
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cypherindigo
User: cypherindigo
Date: 2012-09-07 12:26 (UTC)
Subject: (no subject)
My suggestion, which I am sure has already occurred to you, is to get a complete set of your records from OHSU.

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Blair MacGregor
User: blairmacg
Date: 2012-09-07 12:43 (UTC)
Subject: (no subject)
Gotta echo that one--especially if OHSU is putting up roadblocks to access.
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cathshaffer
User: cathshaffer
Date: 2012-09-07 12:51 (UTC)
Subject: (no subject)
As a cancer patient, he's going to be generating new records an inch thick about every other week, so whatever he archived on his own would soon be out of date. He really is dependent on the hospital system to hold up their end of the record-keeping bargain, aka providing them to the patient or referred physicians on request.
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Blair MacGregor
User: blairmacg
Date: 2012-09-07 12:57 (UTC)
Subject: (no subject)
I understand it's a great deal of paperwork. I've walked this road with my son's father. But we found it extremely advantageous to be able to read the information and test results ourselves, as well as exchange information rapidly with medical providers (even those in the same facility).
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cathshaffer
User: cathshaffer
Date: 2012-09-07 13:08 (UTC)
Subject: (no subject)
I am sure Jay's doctors have been giving him printouts of pertinent test results all along, but this wouldn't really help with the JH situation as they need the complete record, and that would be a pretty ridiculous archiving task for a patient to take on simply because of a paper jam in a fax machine somewhere.
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Blair MacGregor
User: blairmacg
Date: 2012-09-07 13:26 (UTC)
Subject: (no subject)
I do understand, and I'm not trying to argue for argument's sake. I'm simply sharing what worked for us in a similar situation.

In my situation, we visited, weekly, the medical records office of the facility where my son's father was receiving treatment. We received a printout of everything--from test images to chart notes--that had been added to his record since the last time we picked them up. It became part of the routine, just like the blood draws.

It did indeed result in stacks and stacks of paper. And it is indeed a hassle, and it shouldn't have to be done by the patient and/or the patient's supporters. It isn't the best option for everyone. But in our situation, we found it preferable to constantly trying to track down information that was in the control of others and hoping the system worked to our advantage.
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Laura Anne Gilman
User: suricattus
Date: 2012-09-07 12:39 (UTC)
Subject: (no subject)
Institutional incompetence is, alas, a multinational thing. But when it is also in clear defiance of the law, then Official Notice should absolutely be given. Loudly and in triplicate until correction is made, apologies offered, and policy is changed.

Edited at 2012-09-07 12:39 pm (UTC)
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cathshaffer
User: cathshaffer
Date: 2012-09-07 12:50 (UTC)
Subject: (no subject)
My experience with my mom was very similar. I have a vague memory of showing up for her first new patient appointment at UM, and having to wait an extra hour or two while they contacted the transferring hospital to get records that were supposed to have been transferred already.

Also, emailing medical records is an absolute nono under HIPAA because it is not secure. They of course have to give you the records if you show up for them in person, and most hospitals will send them to you through the mail (although some won't). It's nuts that the JH fax machine was a problem. Wow.
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dionysus1999
User: dionysus1999
Date: 2012-09-07 12:59 (UTC)
Subject: (no subject)
Blue Care Network's fax was down for over a week last winter. I called them multiple times before they repaired it. Guess they needed a break.
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dionysus1999
User: dionysus1999
Date: 2012-09-07 12:52 (UTC)
Subject: (no subject)
You're absolutely right, Jay. I've heard similar stories regarding other health systems and the one I work at regarding medical records. It seems to be systemic problem. We've had to turn people away for infusions because wherever the patient had their labs drawn wasn't able to get it to our staff.

Here at "midwest health system" we're going through "growing pains" as we update our computer systems to be compatible to do just that, transfer medical records electronically. Most of the staff here are still learning the ropes.

Unfortunately, until such time as all health systems are upgraded to an electronic medical record, I would recommend anyone with chronic medical problems create a paper file and keep copies of their records. It's the only guaranteed way to make sure you have them when you need them.

And if your records are a few years old it's likely they are stored offsite, which means there's a bottleneck for retrieval.

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When life gives you lemmings...
User: danjite
Date: 2012-09-07 14:51 (UTC)
Subject: (no subject)
I have been following your interactions with the system closely for a long time you- it is dangerously fucked and, yes, if you weren't so amazingly competent at systems analysis, situations management, trouble shooting and also one of the most gracious and persistent people I know- you would be either dead broke or flat out dead by now.

From records issues to coverage issues to billing issues to scheduling to permissions issues and between OHSU, four doctors offices, your insurance company and other organisations - all made of people with power over your mortality whom you have to nurse to execute their roles - you have had something stressful added to your plate at least weekly during all of your treatments.

The system is long past broken. You are alive despite it as much as because of it.

Edited at 2012-09-07 02:52 pm (UTC)
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Elizabeth Coleman
User: criada
Date: 2012-09-07 14:59 (UTC)
Subject: (no subject)
It boggles my mind that we haven't come up with a better secure records transmission system than faxing.
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Michael
User: michaeldthomas
Date: 2012-09-07 15:16 (UTC)
Subject: (no subject)
I am so sorry.

That sounds way too familiar. That's one of the reasons why I became the stay-home caregiver for our daughter. I've lost weeks to such things.

My personal favorite is when extra layers of subcontractors are added to the insurance process and nobody is notified about the changes.
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Bob
User: yourbob
Date: 2012-09-07 16:06 (UTC)
Subject: (no subject)
Three things to add:

New York Times Op Ed. Do it. Speak for those that can't.</p>

Thank goodness you're not in the Mental Health system dealing with this shit. It IS the same shit.

hugs. good thoughts. good lucks. and BREATH.

Okay, technically more than 3.

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Amy Sisson
User: amysisson
Date: 2012-09-07 16:40 (UTC)
Subject: (no subject)
1. Ditto -- I would love to see this in a major newspaper.

2. May I post a direct link to this blog entry?

3. Thank you for writing this. It's all valuable information, but I am especially filing away for future reference the bit about you having to specify the date range of treatment, which would not have occurred to me.
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martianmooncrab
User: martianmooncrab
Date: 2012-09-07 17:14 (UTC)
Subject: (no subject)
My last year in the Navy, I copied my medical record from the two battered files. Right down to the blood work slips.

And every now and then under the FIA I get an updated copy of my current medical record with the VA.

Because I have so much trust in any system.

When dealing with any system, I make it a point to have my own copies of everything, being paranoid really does help.
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shoofus
User: shoofus
Date: 2012-09-07 17:29 (UTC)
Subject: (no subject)
you are absolutely correct, the system is dysfunctional and the doctors, the 'end process providers' in this system, IF you can even get to them, sit by passively and do nothing, and take out their rage on the patients in some cases, seeing exactly what you do but not fixing it, having given over control of medicine to administrators and insurance companies, as far as i can tell.

you are tenacious, incredibly bright and even so had to be very lucky to get the results you did, i admire your capability, and hope you can keep being a voice of reason and guidance as you fight your way through this mess. please keep on posting your thoughts and insights, not enough people do.
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Deire
User: deire
Date: 2012-09-07 17:39 (UTC)
Subject: (no subject)
I am so sorry you had this inflicted on you. When you are ill is the last time you have the wherewithal to fight a complex system error.
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patches: Medical
User: 7patches
Date: 2012-09-07 18:06 (UTC)
Subject: (no subject)
Keyword:Medical
As a Medical Records Professional, I recommend that you send a complaint to the Compliance office of both institutions.
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Scott Raun
User: sraun
Date: 2012-09-07 19:33 (UTC)
Subject: (no subject)
Oh, this sounds familiar. I've deal with it at a much less critical level for years - my clinic cannot reliably get refill fax requests from my pharmacies. From the down-the-street pharmacy, the failure rate runs about 30-40%. From my mail-order pharmacy, the failure rate runs about 80%.
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When life gives you lemmings...
User: danjite
Date: 2012-09-07 20:43 (UTC)
Subject: (no subject)
I have to agree. Categorical Imperative to send to NYT or somesuch.



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Evelyn
User: jaborwhalky
Date: 2012-09-07 22:44 (UTC)
Subject: (no subject)
Next time you are online and not dealing with this medical paperwork crap, Ping me I have an idea for something that will not only I hope amuse you but also help you out.


On a side note if I could make everything better I would, I hate that this has been happening to you for so long and I cant do anything to fix it.
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LiveJournal: pingback_bot
User: livejournal
Date: 2012-09-08 06:34 (UTC)
Subject: "[cancer] Adventures in the allegedly best healthcare system in the world"
Keyword:pingback_bot
User natf referenced to your post from "[cancer] Adventures in the allegedly best healthcare system in the world" saying: [...] Originally posted by at [cancer] Adventures in the allegedly best healthcare system in the world [...]
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fledgist
User: fledgist
Date: 2012-09-09 02:24 (UTC)
Subject: (no subject)
OHSU is not the only institution with such problems. My wife and I have had problems of this kind with Emory. My mother-in-law had a coding problem with another provider here in Atlanta (Medicare was billed for a prostate exam, much to our amusement).

Getting records transferred is a very serious issue. I've had to deal with it a couple of times, and each time data vanishes, it costs a great deal, it takes a long time, and the burden rests on the patient. So far, it hasn't happened in a crisis.

However, even within the same institution, record keeping and record transmission can be spotty, unclear, and potentially threatening to the patient. I've found that out the hard way (getting the wrong dosage of a blood pressure medication in one case).
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Danny Adams
User: madwriter
Date: 2012-09-11 01:56 (UTC)
Subject: (no subject)
But thank heavens we have righteous folks fighting to keep us from having government death panels...:/
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