Jay Lake (jaylake) wrote,
Jay Lake

[cancer] Adventures in the allegedly best healthcare system in the world

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,

Tags: cancer, health, personal

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