Our Broken Medical System

Our medical system has changed a lot over the last 20 years, especially for the doctors working in the system.

Intuitively and through our own experiences, we can see that doctors are struggling with the changes including high levels of burnout, frustration and even an increased rate of suicide. 

So, what is it that is causing the doctors’ struggles? 

Based on a 2018 survey, doctors reported their top two least satisfying factors about medical practice as listed below.

EHR design/interoperability                  39.2% 

Regulatory/insurance requirements    37.6% 

Loss of clinical autonomy                       37.0% 

Professional liability/malpractice          30.2% 

Amount of time with patients                12.4% 

Income/compensation                            12.1%  

In the Medscape National Physician Burnout, Depression & Suicide Report 2019 doctors reported what contributed to their burnout.


These surveys are general and not specific to the issues that are faced by our doctors who are dealing with rare disease patients.  So, let’s look at the top factors from these surveys and how they are influenced by the nature of rare disease care.

  1. Electronic Medical Records (EMR/EHR)
  2. Regulatory/insurance requirements or paperwork
  3. Loss of clinical autonomy which often leads to longer hours at work

Electronic Medical Records (EMR/EHR)

Our electronic medical records reflect the many, unusual and complex issues we face.  

Have you ever gotten a paper copy of your medical records?  Let’s just say, when dealing with rare disease it looks a lot more like a copy of ‘War and Peace’ than a dimestore novel. 

With a lack of definitive testing and diagnosis, few evidence-based treatments resulting in lots of trial and error with off-label medications plus our multi-system and often co-morbid diagnoses and issues, we are not easy or straightforward patients which gets reflected in our EMR. 

Get copies of your medical records and review them for mistakes or omissions.  Written information, such as your history, current medications, prioritized list of symptoms and a clear reason for your visit can simplify your doctors’ interactions with your medical records and improve the accuracy of your records.

Regulatory/insurance requirements and/or paperwork

As patients, we may not see the time spent on this, but it is important for us to understand and appreciate the effect our rare disease has on this.

Think of how many times your doctor has had to fill out paperwork for insurance coverage for a test, procedure or for your medications?  Our medications can be very expensive and without standard treatment protocols for our rare diseases, insurance companies are more likely to require prior authorizations or deny the medications which may require multiple appeals to get the medications covered.  For many of us, we can not tolerate a class of medications, a specific medication, formulary or brand requiring a compounding version. Each of these accommodations may require additional time and energy, by the staff, to jump through the required hoops. 

Recognizing and acknowledging the extra effort needed to get insurance approval is important. You can get a copy of your insurance policy and do some of the legwork, working with your insurance company to help ease some of the burden on your doctor and their staff. Facilitating things with the insurance company can often help keep things moving along and get things approved more quickly.

Loss of clinical autonomy which often leads to longer hours at work

Loss of clinical autonomy is especially important to our rare disease doctors who are often early adopters to treating our rare diseases so may need extra time to work with patients and leeway to practice in ways that they have found to be beneficial to their patients. 

A simple example is the standard amount of time allotted for an appointment. To do a good job and truly serve a rare disease patient, the doctor needs the ability to take a thorough history and to spend the time needed to develop an appropriate care plan while creating a connection and a sense of trust with the patient by listening carefully and answering all of their questions.  As you know, rare disease patients often have many complex issues that need to be discussed, especially after waiting months to be seen by this doctor.

Our rare disease doctors struggle with an internal conflict between staying on time vs. taking the time that is truly needed.  Do you know those rare disease doctors that are always running late, sometimes even by hours? That is a side effect of staying on time vs real patient care where the doctor doesn’t have the clinical autonomy to change the length of the appointment so they run late.  And this results in the doctor working longer hours to make up for it. 

When there is a long wait, at an appointment, I silently thank the doctor for taking the time they need - knowing how grateful I’d be if I needed that extra time with them. 

Our system may be broken but there is hope and things you can do! 

We may not be able to fix the issues with our medical system but we can do things that make life easier and more rewarding for our doctors and their staff.  Letting them know that we understand that we add extra work to their already packed days and that we appreciate their help can go a long way. Pitching in to help and do some of the work also shows we are in this together.  Compassion and understanding for long wait times or delays and complications with insurance issues help build a stronger relationship and provides more support for our rare doctors. Lord knows that they need all the support they can get in our broken medical system! 

Respect and Understanding...always the right answer <3



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