After reading Dr. Mona Kotech’s article titled “Is the era of patient centered care decidedly anti-physician?” I immediately thought of several instances when knowing my health history and current lab readings were vital for providing me with safe care.
I was born with VACTERL Association, a birth disorder that impacts a variety of systems in the body. I have had more than twelve surgeries and a variety of medical complications. I currently have stage IV chronic kidney disease. My personal medical binder is one of the most important pieces of my care.
These days many hospitals and medical practices take a team approach, and if you are a patient like me, you have moved more than once. This means that the only constant in your care is you!
When I was getting ready to move away from my childhood home, I collected all of my medical records, back to when I was born, so that I could assemble a binder that detailed my care and my unique physiology.
Over the years I have expanded those records to include:
- my family history
- laboratory test results
- medical test results
- a list of my current (and past) medications
- a list of current medication side effects (included when a prescription is filled)
- research articles that pertain to my care
Patients may also want to include in their binder a health journal where they can record symptoms, eating habits, exercise patterns and/or mental health.
After each doctor’s appointment, I confirm that I understand relevant laboratory findings as well as my care instructions. When I see a new doctor, I have a portion of my binder that I photocopy for them with my health highlights.
More than once, I have been at an urgent care center needing a new antibiotic prescription. Being able to tell the physician that I need a reduced dosage because of my impaired kidney function has protected my health. Since I am young for someone with chronic kidney disease, and because I look relatively healthy, I know that a doctor would not think to ask me about this.
When I see a new nephrologist, having my past laboratory readings has helped them understand the progression of my kidney disease and how best to manage my care.
As a patient, I understand how integral a role I play in my own care. I am the one who experiences symptoms, I have been to each of my doctor’s visits, and I have endured the exams, heard the prognosis and take the medication. It is my responsibility to ensure that my current physician has all of the knowledge they need to provide the best care they are capable of.
A doctor can be the best in the world, but if they do not have all of the relevant information they need about your oh-so-unique health your care will be impacted.
As a patient, please consider yourself the most important piece of your medical team. From my perspective, that is patient centered care.
Danea Horn is the author of Chronic Resilience: 10 Sanity-Saving Strategies for Women Coping with the Stress of Illness.
