When I was in college my childhood pediatrician decided to retire. I received a legal size envelope in the mail containing a personal note announcing her retirement accompanied by my whole patient chart spanning most of my life. I remember being home on break and flopping myself down on my bed to flip through my chart. It was almost like opening a time capsule.
Reading through my doctor’s handwritten notes was like having a bird's eye view of my childhood and adolescence health. In reading her observations, I gained new insights into my life that I never before had answers to. My chart with my doctor’s notes was precious. I filed the folder away for safekeeping.
In 2011, I returned home to New York after living in Texas. For me, my early 20s was all about figuring out how to function as an adult and part of that was taking care of my health. I needed to get organized. I needed to find a primary care physician (PCP) to replace my pediatrician. Up until this point, walk-in urgent care clinics had acted as my go-to for all medical needs. The next logical step was Google. With one search I found ZocDoc.
Finding a New Doctor
I remember going on ZocDoc, searching for providers who took my insurance and booking an appointment. How cool! I called my friend, Morgan, and I said “Hey, have you heard of ZocDoc? It’s awesome.” She immediately got on her computer to search for the website but at that point in time, ZocDoc did not service Texas. Morgan was disappointed because finding new doctors was always a challenge for her.
Appointment Booked and Ready to Go
I pulled my pediatrician’s manilla folder out and brought it with me to meet my new PCP. I gave her the folder entrusting her with my health information and pediatrician’s notes. I remember thinking “Good job Jenny. Nailed it! Way to be prepared and responsible”.
Out of Network
A year later, my insurance changed and that new PCP no longer took my insurance. I needed to switch doctors to an in-network provider. I called the practice and asked for my pediatrician's file to be mailed to me. They said I needed to fill out some forms to transfer the files. I went to the office to fill out the paperwork (yes, I had to go in person). They handed me a thin file. I opened it to find only a few sheets of paper.
Where were all my pediatrician's notes? Where was my time capsule?
They had thrown them out.
The front-office administrator explained that they only needed the immunization history and they had discarded everything else. I became very upset. I had given the new PCP my pediatricians notes because I naively thought she would be the new guardian of my healthcare. I was wrong. I was angry with myself for being so careless.
Time and Materials
As I looked at my empty file in disbelief, I heard the front - end administrator ask that I pay the office fee for my records. I remember looking up and saying absolutely not. I had them bring out the PCP and explained I would not pay the fee for them to prepare this thin file after they had destroyed my old medical records. The doctor agreed and I never went back.
Each state has its own laws about how much you can be charged for your medical records, whether paper, digital or another format. In the State of New York, “the law allows physicians and institutions to charge no more than 75 cents a page, plus postage, for paper copies of medical records. Physicians may charge the actual reproduction costs for radiographic materials, such as X-rays or MRI films. A provider may not impose a charge for original mammogram films but may charge postage. However, an individual cannot be denied access to information solely because he or she is unable to pay.” (New York Department of Health)
Why am I sharing this story?
I filed this moment away in my memory and forgot about it completely until a few years later when I was sitting with the team brainstorming about OneRecord. As individuals, we all have healthcare stories. It’s what brings us together, it is was draws new team members to the project, it’s what drives us to keep collecting stories and design for them.
We believe in people — the power of the collective in pursuing goals that often seem impossible. Individuals banding together to meet their objectives and making things better for everyone.