I've gone through quite a bit to get the results of my MRI. See here for the previous installment, and here for the start of the saga. I glanced at the report and it looked good. In this post, I'll describe the unsettling things I found when digging deeper. In sum: the whole baroque nightmare of scheduling, performing and delivering results of medical tests is not only inefficient and riddled with needless high cost and waste, but more important there are serious quality problems leading not just to delay and waste, but bad results.
I fully acknowledge that what has happened to me pales beside the waste, incompetence and fraud that pervades the worst medical systems. My point is that, even in the best healthcare systems, bad things are happening.
The Results
I glanced at my hard-won test results and felt OK, mostly because I had been told that radiation therapy took a looooong time to show results, and I shouldn't expect anything to change at the first MRI. There was no OMG or IT'S GROWN LIKE CRAZY in the notes when I glanced at them, so I let it rest. I was tired out from all the effort of getting the darn thing.
Then I looked more carefully. I'm still OK for my personal case, but on close examination, I realized that the final report of the MRI was consistent with the crazy things that led up to it: scheduling the test, taking it, and getting the results. It's all part of a bizarre system that has GLARING flaws that seem like they should be easily fixed, but nothing much happens.
Here is the key paragraph from the earlier of the scans, the one that led to the radiation treatment:
Here is the corresponding paragraph from the second scan, the one I struggled to get:
The first thing that jumped out at me was the simple observation that there are no standards! Radiologists are incredibly smart, well-educated people. College degrees. Super scores on GMAT tests. Degrees from incredibly-hard-to-get-into medical schools that have TINY numbers of students. Then more years getting further training to become medical imaging specialists -- usually five more years, on top of the four years of college and the four of medical school!
If I showed you the whole report, you'd immediately see that even the paragraph and subject-matter organization was different. About the most glaring thing to me was that the second report gave actual dimensions of the tumor, while the first did not! Don't you think that when tumors were involved, specifying the actual size would be the standard?
There's lots more that could be said, but I'll leave it with these simple observations:
- There is no system in place to record and assure that the required location is being imaged. The key thing can be missed because it wasn't imaged.
- There is no consistency of exactly what is reported on and how it is reported. It is difficult to compare reports and assure that what you need is there.
- For tumors, there is no consistent positioning and measurement of size. You could miss a tumor altogether, and easily miss size/location changes.
Conclusion
I'm in remarkably good shape, having a scary diagnosis of an extremely rare cancer. I received great treatment from highly skilled professionals at every step of the way. I received chemo that had only 25% chance of working, but it shrank a rapidly growing tumor. Then, when it started growing again, I got right into radiation, which has at least prevented further growth, and should finally stamp it out. I have nothing to complain about, and a great deal to be thankful for, including all the professionals who treated me.
I've written this series of posts about Medical Testing NOT as an indictment of the individuals who have treated me, but as a serious indictment of the system in which they work. Here is a summary list of the things that "could be improved;" details are in the prior posts of this series:
- Scheduling and getting a pre-auth for a test can be a labyrinth and delay-filled nightmare.
- There are multiple issues with the wasteful, expensive and time-consuming blood test.
- There are multiple issues with specifying and following an exact procedure for the location and mechanism of the scan itself. Instead of being in the system, the nurse has to get information from the patient and guess about other things!
- The equipment and software is built in a regulation-protected bubble, which results in 10X or greater cost and trailing-edge technology.
- Getting results that have already been created by the radiologist can be an obstacle-filled maze, even if you try to use a “patient portal” that is supposed to make things to easy and transparent.
- The patient portal is mostly a sales pitch about how the hospital is wonderful – getting the information is a big problem, and then important information is wrong or just plain not there.
- Finally, the results produced by super-highly-trained doctors based on these expensive and questionable inputs don’t meet any modern standard for content.
Why doesn't anyone in management seem to care? I've often wondered this, and speculated about why several times. What's clear is that there's a hierarchy of prestige in every society, including ours, and that the top of the hierarchy is populated by people who focus on strategy, policy, direction and messaging. They are, for the most part, "above" getting "lost in the weeds." Sorry guys; the action is on the ground, where real things happen to real people. That's where you discover what's wrong, and when you "fix" something, that's where it's got to change.
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