Up until five years ago, I never gave my medical records any thought. I presumed that those records were important references for my Primary Care Physicians, and that they held no benefit for me. This perception was not only naïve, but very incorrect. In time, I would discover that having copies of my own medical records enabled me to maneuver more quickly and efficiently within the medical community.
My education on the importance of my medical records was a slow and painful one. Early on I recall having initial visits with specialists as being non-productive, because the specialists required information contained in my medical records, which had either not been provided or were not given to me to take with me to the appointments. This resulted in wasted time, not only for me but also for the specialists. Other than a routine exam and requesting basic diagnostic blood work, often no further evaluation was done until the specialists had my records. Additionally, if the specialist’s office requested my records, additional time was added between the initial appointment and a second appointment.
This scenario served as my first lesson in my education. It only took a few of these initial appointments before I decided I was not going to allow this scenario to occur again.
I began preparing for an initial visit with a specialist on the same day it was determined that I would be referred to one. If my Primary Care Physician referred me to a specialist, before leaving his office I would talk to one of his office staff about getting copies of my medical records for the visit. Often the staff person would tell me that they would send the records to the specialist prior to my appointment. I would then tell the staff person that I preferred to hand carry my records with me to the appointment. Taking my own medical records with me to an appointment with a specialist provided a guarantee that the specialist would receive them.
Taking my medical records with me worked like a charm. As time moved forward, another scenario began to emerge. As I was going through the referral process from specialist to specialist, I was not getting any closer to finding any answers to my medical issues. This applied to both my spinal problems as well as the Parkinsonism. Additionally, each time I was referred to a new specialist, my Primary Care Physician’s office staff had to make the same copies of my medical records for every new specialist. Therefore, I decided that whenever I received copies of my medical records to give to a specialist, I would make a copy for my own personal records, prior to handing then over to the specialist. Additionally, anytime my Primary Care Physician sent me out for new diagnostic testing, I always requested a copy of the results for my personal records. Some of the benefits of doing this are as follows:
1. Eliminated the need for my Primary Care Physician’s staff from having to make copies of the same information each time I saw a new specialist; they only had to provide me with any records that were in addition to the ones I already had in my possession.
2. Allowed me flexibility when I found it necessary to see a specialist outside of my insurance without having to inform my Primary Care Physician prior to doing so.
3. Allowed me direct access to the medical terminologies that were being used in reference to my health, which allowed me to research my own health on the internet; this contributed to a better understanding of potential conditions and assisted with my ability to communicate with the specialists in an educated manner.
4. Allowed me to research various topics, conditions, etc., based on the information in my medical records, that were possibly associated with my symptoms; this provided enough education to have the ability to recognize when a physician made statement that were contrary to known facts.
5. Allowed me to compare what was in writing versus what may have been communicated verbally during an appointment.
This method worked for quite some time until I was faced with the inability to continue in the workforce. My initial intent was to discontinue working, only temporarily, while I went off my medications in order to obtain a diagnosis. So, initially I filed for short-term disability through the state. This process did not require me to provide medical records. It was only necessary to fill out a form and have my Primary Care Physician fill out a form as well. I received approval for my claim, and I was relieved to be able to concentrate on my health, without having to worry about a loss of income.
Approximately two months later, the state sent me a letter stating that a neurologist of their choosing must evaluate me. I will not go into any detail about my experience with that visit, except to say that it was a waste of taxpayers’ money. What I will elaborate on is the fact that I now had to obtain all of my medical records that pertained to my medical conditions, without exception. Up to this point, the only medial records that I was keeping for my personal files were the records I had received from my Primary Care Physician, which did not include any reports from past visits with specialists. Again, until faced with this new scenario, it never occurred to me that I should probably have copies of my medical records from every specialist who had evaluated me. I now had to contact each specialist’s office, request the records, and pay for the records. Since I had to provide these records to the state appointed neurologist, I made sure that before I provided her the copies, I made copies for my own personal files.
The situations that I encountered throughout the last five to ten years provided the lessons I needed to learn about the importance of having copies of all my medical records for my personal files. Of course, there are some missing pieces in my personal files, because it was difficult to recall every doctor I had met over the last ten years. Therefore, I have a set of medical records, that are as complete as possible, and I continue to add to them as necessary. Building my personal medical files became my greatest asset when I came to the realization that I was no longer able to be in the work force permanently. With this realization, I was fully aware that it meant that I would now have to deal with Social Security. Like many others who find it necessary to file for permanent disability through Social Security, I did not look forward to the task.
I began the process of filing my application for Social Security. I was very pleased to discover that I could complete the initial application online. Although I will detail the Social Security process on a future post, I would like to address the important part that my personal files of my medical records played in the process. Because I now have the majority of my medical records in my possession, I was able to provide Social Security the entire portfolio of my medical history. I believe that providing my medical records when I filed the initial application decreased the length of time I had to wait before I received a determination from Social Security.
Every patient has a right to request copies of their medical records. When a patient makes a request for their records, he / she will normally be required to fill out a request form. Additionally, I did find that most physicians charge a fee to the patient for providing the patient with copies of their records. The fees vary, but I found that many charged a fee per page. (Example: 25 cents per page) Some physician’s offices will make the copies while the patient waits, while others will provide the patient a future date to return to pick up the requested copies. Each physician’s office has its own policies.
In a future posting, I will address how I have set up my personal medical files. Although each patient’s situation is different, the patient with a chronic condition will more than likely have a large medical records file. Additionally, patients with multiple conditions will have an even larger medical records file. Therefore, I fine tuned how I have my medical records organized, based on my two main chronic conditions. Keeping my records in an organized filing system has proven to save time and has added convenience when I must access my files.
The point I want to make in closing is this: If you are a patient, who is in the diagnosis process or already has a diagnosis, make time to create your own personal medical files. There is a high probability that a chronically ill patient will need to provide medical records to various entities. The patient should take a proactive approach, and have those medical records in hand, so that he / she is not dependent on people in the medical community to provide those records in a timely manner. This is just another way in which a patient can take charge and become his / her own advocate, with respect to insuring that his / her medical needs are met in a timely and efficient manner.
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