[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,

16 thoughts on “[cancer] Adventures in the allegedly best healthcare system in the world

  1. Colleen Lindsay says:

    Ugh. I am so sorry about this!

    I was largely spared similar experience when my breast surgeon moved from Columbia Presbyterian to NYU here in New York, thanks to a quick-thinking doctor. I chose to follow her, because I trusted her and we had a good relationship. After my doctor and I discussed my transferring to NYU, I asked about the transfer of my records. She started to explain the process, and partway through her explanation said “Oh, the hell with it. Hang on here for a minute.” She left the office for about 30 minutes. When she came back she was holding a stack of hard copies of my records and a CD of my scans. She handed them to me and said “This will be way faster. Just bring these to NYU when you come see me next week.” And just like that, all the red tape was cut through. The surgeon later told me that one of the reasons she wanted to switch hospitals was the endless amount of administrative red tape that her patients were forced to go through. Although Colombia Presbyterian has a fantastic record as a teaching hospital, it has a terrible reputation for administrative fuck-wittery and incompetent support staff.

    Yes, our health care system is seriously broken.



  2. Thank you for sharing this and your many other experiences with dealing with the bureaucratic side of this situation. Even if the systemic issues are not resolved, you having taken the time to document this information and broadcast it may well save one or more other people from the consequences of not having followed-up, taken notes, etc. etc. in the future. Maybe we shouldn’t have to do all this, but if it’s reality, better to be aware of it than surprised by it.

  3. emeraldcite says:

    I think your post should be sent by your readers to each and every member of the Senate and House.

    Then, I think other stories of these failures of the “best system in the world” should continue to flood representatives.

    Hoping the rest of the trip is as smooth-sailing as it possibly can be.

  4. Personally I think everyone should have a right to copies of their own medical records and we shouldn’t be treated like irresponsible children. I’ve had two local doctors up and move, with no contact information, and none of my medical records being available for new doctors. I’m just waiting to be told I need to redo an expensive and inconvenient test because those records are gone. And why aren’t all these things in electronic form online somewhere or otherwise available to email? FAXing?

    In any event, enjoy checking out the physics/astronomy department and space telescope today. The space telescope is 1980s/1990s technology, and does not even FAX the images back to Earth…

  5. pelican says:

    Yes, Jay, the system is so profoundly broken, in so many ways.

    Not to be paranoid, but based on what you describe, I would say there is a reasonable chance that your records will not make it from Hopkins’ medical records to the various offices you’ll be visiting next week. The “oh no, we’ve got them, trust us” lie is a huge red flag for further shenanigans.

    I would strongly recommend calling your actual oncologist’s and surgeon’s offices today, speaking with someone you know by name and face, explaining your situation, and asking if they would please, please fax the most relevant bits (recent labs, surgical report, pathology report, most recent note, maybe initial H&P … they will know what to send) directly to you.

    Clinics are not *supposed* to do this, but most people probably will, because they like you as a person, and they know that medical records is fucked.

    Of course, there is no gambling in Casablanca.

    It’s a terrible system. Totally third world, except it’s not even clear who you need to bribe and how much.

    Good luck.

  6. Stevie says:


    I’m so sorry to hear this; I am keeping my fingers crossed that they will finally get it together so you can get on with the second opinion process.

  7. Rick York says:


    Have you thought about sending a copy of this post to the Oregonian or any of the local TV stations here in Portland?

    I know that OHSU tends to be a sacred cow around these parts but, it wouldn’t hurt to try and blow a loud whistle.

  8. Matte Lozenge says:

    Emerald and Rick are right. This is a convincing and important post. It describes your own experience in concrete detail & then takes a step back to do the failure analysis and big-picture view. It should get wider circulation. It might even save someone’s life!

  9. Ellen Eades says:

    So sorry to hear what a horrible experience you’ve been having. One of the reasons I ended up choosing to work at a small nonprofit women’s health clinic instead of a hospital or Planned Parenthood was quite simply the short chain of command: I could always find the boss, or the boss’ boss, and get what a patient needed quickly. Now that I’m no longer in healthcare, I’ve realized how rare that situation was — and that was only for healthy women, not people with chronic long-term illnesses trying to make their way through the labyrinth of insurance companies. Again, very sorry, but sadly not surprised.

  10. Cora says:

    Sorry you’re having even more problems heaped upon you, Jay.

    Though medical miscommunication is not a US-only phenomenon. I know of several cases here in Germany as well.

  11. Pam says:

    Sorry you’ve had such a terrible time – it is a crying shame. I agree that this should be published.

    I too have had times as a cancer patient that I’ve thought — what if I didn’t have such good insurance? . . . didn’t have a good social support structure? . . . didn’t have a husband with a job? . . . didn’t have the intelligence to ask more questions? . . . didn’t have extra money to cushion our way through this?

    Health and survival shouldn’t require a college degree and (relative) affluence.

  12. Karen Schaffer says:

    What really perplexes me about stories like this are why the people who are responsible for the record transfer don’t follow through. How do records transfer requests get totally lost? Is there no incentive for people to make sure a request is taken care of, thoroughly and accurately?

    I’m guessing that the answer is that the clerical workers responsible are overworked, underpaid, rated on throughput rather than accuracy, perhaps are expected to blindly follow procedure rather than think about what’s really needed (time savings!), and by necessity become desensitized to patients’ situations by the sheer volume of what they’re expected to deal with. Which is neither an excuse nor even an answer, really, but another symptom of the problem.

    It’s especially odd to me, in your account, that even when the two hospitals understood that there was a problem, they were still unable to work with each other to solve it, instead relying on you to mediate. What is wrong with those people? Don’t they have pride in doing their job well? Or do they feel that problem solving a task like this falls outside their job duties? Truly, I’m appalled and perplexed.

    Wishing you good luck in the future.

  13. Janet Freeman-Daily says:

    When I asked for a complete copy of my records from Virginia Mason, I was surprised to discover that the radiology scans were available on CD the next day. In fact, if I’m willing to wait a couple of hours, I can get a CD of my scan the same day as the scan.

    Clinic notes, scan reports, and lab reports, however, are handled differently. Despite the fact that all of these are available electronically to practitioners throughout VM, I had to wait a week to get a pdf file of those records because the Records office did not have my physical paper file. My paper file was still at the office of the last doctor I’d visited (and he hadn’t filed his clinic report electronically yet).

    I now ask for copies of paper records and CDs of scans after every visit so I have a complete set at home. I’ll still have to request clinic notes from VM, but I have what I’d need for a second opinion.

  14. Julie Richardson says:

    Oh your story is exactly why I get all scans on CD and pick up hard copies of all visit notes, test results and labs and keep them in a binder that goes with me to all medical appointments. My binder is big enough that I now leave the older records in the car during appointments but if I see a new doctor, it all goes with me. You are right to check every time. My thoughts are with you.

  15. Lisa Morgan says:

    I am so, so sorry that you have to deal with this on top of your cancer. I had breast cancer 10 years ago. I only had to deal with a fraction of what you are going through and I felt overwhelmed. I too wonder how people (especially the elderly) without the knowledge and communication skills deal with these situations. Between the HIPAA regulations, the hospital paperwork and trying to get the insurance companies to pay the claims, managing the documentation for your treatment can be a full time job. There has to be a better way.

    My thoughts and prayers are with you. I hope that you will find a great treatment that gives you a wonderful quality of life for many years.

  16. David Ivory says:

    This sort of screw up embarrassed the Auckland District Health Board in New Zealand to complete the move to digital.

    This article is part of a series but it discusses progress in the processes of improving outcomes in New Zealand’s largest health region.


    Of particular interest is the ‘passing up the line’ when action items are not completed by deadlines.

    This is the introduction to the series…


    Like ‘business’ processes healthcare procedures are amenable to analysis to identify improvements… but where a nationalised system focuses on better health outcomes for patients a privatised for-profit system has perverse priorities when it comes to what constitutes improvement. $$$

    The rest of the world shakes its collective head at the US and wonders – why?

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