Creating my own medical home’

About 5 years ago I moved to a new town with two hospitals. I was a healthy 30 something with no real ongoing medical issues, so I picked a physician the way most people do — I found a female doctor on my list of “in network” providers and figured I was good. Not long after I made that choice — my health started to change, and so did my needs.

Four years ago, I had Pulmonary Embolism. I went to the hospital closest to me that was also a part of the medical group my PCP belonged to. They took good care of me and caught something that could have been life threatening — so I was feeling pretty good about them. The PE also scared me. Following the PE, any provider I chose was associated with this medical group — because I really believe in the power of one medical record and I did not want anyone to miss something important in my care.

I have family members who have had something “missed,” either because their providers were on paper charts, they changed care settings or because a routine test was forgotten. It made me feel reassured to know that no matter where I went in this medical system that everyone would have access to my records and images and so why would I ever choose a provider that was not in this same system?

Well, fast forward several years.

I have had a series of illnesses and injuries that should have been sort-lived and easily resolved, but nothing ever responded the way providers would expect. Over the course of the past year, it has been determined that i have an autoimmune inflammatory arthritis — most likely Psoriatic Arthritis (because it runs in my family, but I don’t have the right symptoms to check that box definitively.

So here I am with a complex medical issue, and yea! I have all my information in one chart. But is that what I really need? The more medical care I need, and the more I interact with the medical system as a patient — the more I realize what is most important to me as a patient. I need care.

I have had 3 PCPs over the course of 5 years. Most recently the practice where I am being seen has moved to a “Value” model that seems to have little “Quality” behind it as far as I can see. I can only see my PCP once every six months, and only then if I schedule it six months in advance. I don’t really care for the NP in the practice, but I have been told by the practice manager that she is the “first line” I must go through and the doctor is there to answer questions or consult if she needs it. Even then, I can never get a sick visit when I need one, so I end up being a bit of a frequent flyer at the prompt care.

I need providers who know my name and know my story. I need to find providers that are willing to pick up the phone and call each other about my care. I want to be able to see my primary care office when I am sick instead of marching my immune-compromised body into the prompt care with a waiting room filled with kids suffering from whatever virus is going around daycare this month.

It has actually taken getting over a good bit of inertia to make this change. There is no easy way to find the providers who are going to be the best fit for me. I end up asking my friends, I ask the one specialist I really like if they have folks they would recommend, I end up going to the university medical center in the city for my Rheumatology needs.

I am slowly building my own medical home — one that sort of looks like a patchwork quilt. In town I have an Orthopedist, a Podiatrist, a Gynecologist, & a Pulmonologist that are a good fit for me, and I travel two hours to the city to see my Rheumatologist. I even know which lab in town has the easiest time drawing my blood and what hours are the best to get in and out. I am working on the PCP piece of the fabric now.

In the end, it is more important to me that my providers are connected, and that they share my story and goals — than it is that my data is connected. Don’t get me wrong, if I could have all of this *and* one medical record, I would jump at the chance. But the record — it is not the most important part of my care.