The Patient is the Messenger, Not the Message

I work in clinical informatics research where we study healthcare information tasks and apply our findings to new technology solutions for clinicians, patients and families.

In 2011 I was diagnosed with kidney cancer. I was very depressed and stressed out, yet I couldn’t help wearing my “informatics research hat” and observed endless opportunities to improve the delivery of information and communication in my care. This post covers an issue that doesn’t seem to get much attention, but continues to be the most frustrating part of my care.

In healthcare technology the term ‘workflow’ refers to the flow of information and actions that make up healthcare processes. There is no shortage of attention on improving workflows for clinicians, but patients encounter complex and inefficient workflows too.

Every six months I see my cancer specialist for a follow up visit. Before each visit I undergo an image study (such as a CT scan) so my specialist can check for any reoccurring cancer. I have good insurance, but it’s an HMO, so I am required to have pre-certifications, referrals and all my radiology procedures have to be performed at a specific hospital, not my specialist’s hospital.

I initiate my follow up workflow a month before my specialist visit and, if all goes well, I make a minimum of five phone calls, wait five to ten days for three different processes, drive twice to the hospital where my CT scan is performed, and physically transfer all paper documents and digital files. I have performed this workflow six times over two and half years and every time I encounter at least one new problem that can delay my care. This workflow is not unique to me or even a cancer patient. Many patients receiving specialty care involving diagnostic tests or procedures will manage a similar workflow.

Figure 1 is a diagram of this workflow. The first time I went through this was right after surgery. I was in pain, heavily medicated and had a drain sticking out of my side. Not one single person was able to guide me through this process and I literally had no idea who to call first.  It took me about a year and three follow up visits until I finally figured it out.

This workflow is so completely lacking in patient centeredness it inspired the title of this post. I will discuss why this might be and how it could be improved, but first, while painful and frustrating, please bear with me as I present a detailed description of the entire workflow and all the potential problems that can occur at each step (feel free to skip ahead to “Discussion” if you feel you are getting the point!). As you read through this, imagine a complex patient with more serious health issues having to deal with this, more than likely someone in your circle of family and friends. For example, an elderly patient living alone or a single mother of a chronically ill child, each requiring multiple diagnostic studies and referrals.

Scheduling a CT scan

Figure 1: The “patient workflow” I have to manage every six months as part of my cancer follow up care.

Step 1: The Prescription

The process starts with my cancer specialist writing a paper prescription for my CT scan. Without it I can not get care.

What can (and has) gone wrong:

  • If the prescription contains the slightest error or ambiguity there are no shortage of healthcare clerks who will deny the continuation of my care. This can occur at every subsequent step of the process.

Steps 2 – 3. Precertification

I need to have my CT scan precertified by calling the precert department at my specialist’s hospital, Hospital A. Even though the precert department is in the same building as my specialist, I have to call them from home and read aloud my prescription information. This might seem simple enough, but doing so requires me to decipher the handwritten prescription and know things like, +/- gad means, “with and without contrast,” abd stands for abdomen, and a four digit number is an ICD9 code. Two to three days later I get a call with the precert number that I must have to continue.

What can (and has) gone wrong:

  • One time my specialist did not write the ICD9 code on the prescription. There are 10,000 ICD9 codes, but (unlike most patients) I know how to look mine up (189.0). Even so, the scheduling clerk in Step 4 told me the ICD9 code had to be written on the prescription or I could not have the CT Scan. I thought about forging the prescription, but feared for my liberty. Instead I went through multiple phone calls/messages to my specialist’s office so they could write a new prescription, fax it to Hospital B and mail it to me. That was about an hours worth of time involving three people to add “189.0” to a piece of paper.
  • Another time the clerk misinterpreted my voice mail message and pre-certified the wrong type of CT Scan. I was experienced enough to catch the error and had to resubmit. This would have certainly caused problems in steps 4, 7 and 12.

Step 4. Schedule the Radiology Visit

I call Hospital B to schedule the CT Scan. I read aloud the prescription information and precert number. The scheduling clerk always takes the time to threaten me that if I don’t bring the prescription, I will not be allowed to have the CT Scan.

What can (and has) gone wrong:

  • One time my specialist wrote the prescription for a “low dose” CT scan. This is a good thing as it will expose me to less radiation. Hospital A provides this scan, but my insurance forces me to have my CT Scan at Hospital B. Hospital B did not offer a low dose CT Scan, so the clerk would not let me schedule the CT scan until my specialist wrote a new prescription (high dose?). I had to call my specialist at Hospital A and have a new prescription written, faxed to Hospital B and mailed to me.
  • A year later Hospital B offers low dose CT scans, but for some reason “low dose” does not have to be specified on the prescription.

Steps 5- 6. Referral

I can’t see my specialist without a referral from my primary care physician. When requesting any referral my primary care office demands that I provide them with my specialist’s provider number, ICD9 code and other information. The clerk at my specialist’s office (and a sign in the waiting room) warn me that without the referral I will not be seen or will be charged the full amount of the visit.

What can (and has) gone wrong:

  • It is my responsibility to find my specialist’s provider number. I might find it on my insurance company web site (no small feat there), but I have to be careful. There is a provider number for the individual specialist and another for the entire practice. One time I had the wrong provider number and my specialist office clerk had to call my primary care office clerk at the time of my visit (Step 11). I have learned it is easiest to simply call the specialist office and ask for their provider number.
  • As of December 2013 I have to also provide a new National Provider Identification (NPI) number. Even though there is a NPI lookup site it is very easy to make the same mistake between the individual provider and practice number (try it yourself). Again, I just call and ask.
  • Processing the referral requires a relatively simple data entry task from one of the clerks at my primary care office. However, my doctor tells me he has so many referral requests he has a clerk working full time processing them. I assume this is why it can take up to three days to process.
  • My primary care office has a patient portal that allows me to request a referral online, but the portal is not integrated with the referral system. As a result their clerk has to read (or copy-paste?) my information from the portal and retype it into her referral system. I’m guessing the lack of integration plus workload is why I never receive confirmation that my referral has been processed.

Step 7. The CT Scan

I arrive at Hospital B for my CT Scan. The outpatient admission clerk makes four copies of my prescription, drivers license and insurance card and adds a five page printout from their computer system. This stack of paper is handed to me so I can walk across the hall (15 feet) to the outpatient radiology waiting room where I hand the stack of paper to a radiology clerk. (Side note – there is discount on Hospital B parking, but the clerks never tell me about it. I have to remember to stamp my own parking ticket with the stamp sitting on the counter. I always tell other patients who thank me for the money saving tip).

What can (and has) gone wrong:

  • Despite all my previous efforts, half the time the outpatient admission clerk can’t find my precert number in their system, and takes the opportunity to threaten me that I will not be allowed to have my CT Scan without it. One time, after a 20 minute group meeting of four clerks/managers, I was told my precert number was entered in another patient’s chart by mistake.
  • I have repeatedly witnessed other patients and family members reduced to tears and/or yelling and cursing over lost pre-cert numbers and other paperwork problems.

Steps 8 – 10. CT Scan, Acquire the Radiology Image Data and Report

I can share massive amounts of music, videos and others files with my friends, family and colleagues, but the US healthcare system is incapable of transmitting a 400 MB CT Scan data file (about 4 or 5 songs on iTunes) between two hospitals. So, it is my responsibility to acquire and transport a CD from Hospital B to my specialist. I’d prefer to pick up the CD the same day I have my scan, but it takes a day for the radiologist at Hospital B to review the study and I want their report to be on the CD. I’d prefer to arrange the CD pickup when I am getting my CT scan, but they won’t let me do this in person. Instead I have to go home, call the Hospital B records department (where I was at 30 minutes before), request the CD, wait up to two days for them to process it, then drive back and pick it up.

What can (and has) gone wrong:

  • One time I picked up my CD  and was getting into my car in the hospital parking structure.  A breathless clerk came running up to me. He gave me another patient’s CD by mistake.
  • Hospital B clerks always tell me the radiologist’s report will be transmitted (mailed) to my specialist, but it has yet to be delivered on time (or at all as far as I know).

Steps 11-12. The specialist visit.

Finally, I arrive at my specialist’s office for the follow up visit. I should be most concerned with my health, but my attention is focused on worrying if I have all the right paperwork and the CD. At the check-in counter the specialist clerk asks for my CD and loads it into a computer so the specialist can review my CT Scan.

What can (and has) gone wrong:

  • At my first follow up visit, the clerk could not get the CD to read into her computer. She actually rubbed the CD on her pant leg until it worked (she said she does this all the time). If the CD had failed, my entire visit would have been a waste of time and I would have had to reschedule and go through the entire process of requesting and picking up a new CD (Steps 9-10). Since then I have installed an application on my home computer where I can archive all my image studies and burn duplicate CDs (Figure 2).
  • In half of my visits there have been problems with the referral. One time it wasn’t processed. Another time I submitted the wrong provider number (Step 5-6). On my last visit I processed the referral too soon. I did not know referrals expired after 30 days and I requested mine 32 days before the visit (of course the clerk scolded me for not knowing this).
  • Finally, every single time, I receive a letter from my insurance company telling me the CT Scan was approved. However, this letter always arrives about two months after my specialist visit.
Figure 2: This is the Digital Imaging and Communications in Medicine (DICOM) program Osrix, I use to backup and manage all my images study CDs. I also use it to manage family member medical image studies including the dog! That's her xray being displayed.

Figure 2: The open source Digital Imaging and Communications in Medicine (DICOM) program OsriX. I use this to backup and manage not just my medical imaging CDs, but my entire family including our dog (that’s her x-ray, not mine).


Whew! I’m sure many smart people have endless ideas on how technology can improve all this, but there is a long way to go and it is all deceptively complex.  Interoperability refers to transferring patient information between different hospitals and clinics and it is a massive challenge in health IT. Unless you are a patient of the VA or some mega healthcare organization that has bought out every hospital and clinic in your area (and spent hundreds of millions implementing an EMR across their entire health system), the current state of interoperability is pretty much nonexistent. The two hospitals and two doctors offices in my workflow are incapable of electronically sharing my date of birth let alone all the orders, approvals and data files required in my followup care.

Developing a healthcare infrastructure that is truly interoperable will make look like a walk in the park. Despite the mind numbing complexity and challenges I honestly don’t think technology is the major problem here. As a patient the source of my frustration has less to do with technology and more to do with the culture of our healthcare system. In order to understand that culture, I observe and study all those clerks.

While I have encountered a few helpful clerks, most are not, but I don’t blame them. As I see it, they are manifesting symptoms of the disease impacting our healthcare system. A clerk’s performance (and their management) has less to do with patient service and more to do with implementing the red tape minutia of convoluted archaic processes. That’s because the system isn’t patient centered, it’s billing centered. Clerks don’t treat me like a patient (not one has ever asked me how I am feeling), they treat me as part of their information system (or lack of). As a patient-system-cog, I’m not there to get better or receive care, my function is to transmit numbers, forms and files. When I fail to correctly execute (let alone understand) my system functions a clerk is right there to present me with the uncaring business side of healthcare.

At the same time hospitals are obsessed with patient satisfaction surveys. In fact, clerks often hand me these surveys (paper of course) moments after scolding me and/or threatening me and my care. Despite all the effort and dead trees these surveys don’t seem to result in improvements (search “patient satisfaction survey meaningless” for endless results). However, even if you don’t care about patient satisfaction, there is a compelling economic argument here too. Multiply my workflow by millions of patients and it might be easier to comprehend how the US spends $130 billion on inefficiently delivered healthcare services and $190 billion on paperwork each year.

I worked at IBM where a wise mentor taught me it is impossible to build efficient and elegant systems for processes that are neither. Even if all the current healthcare billing centered processes were, by some miracle, successfully automated that won’t magically transform them to being patient-centered. Hospitals can run endless patient satisfaction surveys and lecture clerks and their managers to care about patients, but until they work from processes that put the patient first, they won’t either.

We spend almost three trillion dollars a year on healthcare, more than any other country in every possible measure. Is it too much to ask that our healthcare system provide a level of service above the Department of Motor Vehicles? What can we, as patients or family members, do about this? Maybe we can start by standing up for ourselves.

I’ve tried different approaches (some not so nice) and found one that, if nothing else, introduces a slight pause and seems to help a healthcare worker snap out of their red tape induced trance. For a brief moment they stop and recall, as if from a dream, that, yes indeed, part of their job is to help me. What do I do? I politely ask a simple question. “I’m sorry, I’m just a patient trying to manage my care and I don’t understand all this. Isn’t there someone here who can help me?”

5 thoughts on “The Patient is the Messenger, Not the Message

  1. Pingback: Follow Up | Dean Karavite's Blog

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  3. Dean Karavite Post author

    Thank you very much Skeptical Scalpel, I’m pretty certain most providers are just as frustrated with all this as patients. Maybe more so since they live it every single day. Just to be clear, I have the best doctors I could hope for. This isn’t a critique on them, but on what comes between us.

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  5. Skeptical Scapel

    Great post. It’s all true and must happen thousands of times per day to thousands of patients.

    I couldn’t help but notice that the problems all seem to involve insurance companies and hospitals. The doctors are doing their best. They even hire people to do nothing but process referral requests.

    And many wonder why medical care us so costly.

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