Depending on where you live, how much you follow the news and your general personality type, you may or may not be concerned about COVID-19. Panicking doesn't help anyone but being prepared may help and certainly won't hurt.
There are a lot of general recommendations out there but here are several specific ways that you can prepare as a rare disease patient.
If you have been seen at a teaching hospital you have likely been seen by a medical student or resident prior to seeing the (attending) doctor. They meet with you first and their job is to take your history and present it to the doctor. Sometimes it goes well but too often it ends up a bit like a game of telephone where your original message is distorted and garbled when it gets to the doctor.
Let's look at one aspect of what is going on here and why things sometimes go awry.
Have you ever thought about the process or framework a doctor uses to get information from you in an interview? Did you know that they are all taught this framework, the medical interview, in medical school and they continue to use it throughout their career?
You’ve probably heard the advice that you should write down questions for your doctor before an appointment but that is usually not enough when you are dealing with a rare or complex disease. Did you know that doctors are taught a ‘medical interview’ that they use as the framework of your appointment? By approaching your appointment like you would a job interview, you can learn how to better communicate and collaborate with your doctor, resulting in a stronger relationship and better care for you.
Let’s look at the way an appointment or ‘medical interview’ is similar to a job interview.
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%
If you have been in the rare disease world for any length of time, you have likely heard of a rare disease expert who has closed their practice, retired from patient care, been pushed out of a larger organization, or opened a private pay clinic.
Experts like Dr. Korson dealing with mitochondrial disease, Dr. Afrin working with mast cell diseases, Dr. Boris and Dr. Schofield focusing on autonomic issues like POTS, and many others, have left leaving even more patients without appropriate or even adequate care.
The sad part is that it is rarely the doctor's choice to step back from rare disease patient care. Often, the rare disease doctor’s practice is seen as too risky, too controversial, not productive enough because of long appointments and high resource needs, or not financially lucrative.
Why does this keep happening and what can we do to help our rare disease experts help us get the care we need?
Let’s start by looking at the reasons our rare disease...