The Importance of Getting Your Medical Records (Guest Post)

This is a guest post from author and blogger Kelly Morgan Deppenwolf

The Importance of Getting Your Medical Records

Every time I think about accessing my medical records I think of the Seinfeld episode where Elaine’s doctor wrote in her chart that she was a “difficult patient” and wouldn’t let her see her record that he was writing in  – and that information was passed from doctor to doctor until she ended up in a vet’s office seeking relief from her rash. As hysterically funny as I find that episode and as obviously exaggerated as it is, it does seem to convey this feeling that I think many of us have about getting our medical records – that they are something for doctors only and not for our viewing. Not only do you have a right to have access to all of these records, if you have a chronic illness, disease or condition, you NEED to have them!

I’d never asked for my own medical records before 2014. I’d requested that they be sent to a new doctor or a specialist when referred, but I’d never requested them for my own personal use. That is until I was fed up. I was ready to leave my third rheumatologist and and not having them sent directly to the new rheumatologist’s office, I asked for them to be sent to me.

But this story really started before that. I was sent to a rheumatologist in 2008 with elevated proteins and complaining of pervasive fatigue and malaise. The doctor explained it away as lifestyle related fatigue (worked full time, mother of two young children, etc.) and sent me on my way. When I was diagnosed with RA in 2011 I recalled that trip to the rheumatologist years prior and asked my general practitioner’s nurse to send me the information on why I was sent there the first time. I expected lab results or my own doctor’s notes in the envelope left at the front desk for me. Instead what I found was a letter from the rheumatologist to my primary care doctor describing the visit, the work-up and her findings – that was when I first realized specialists send letters to your general practitioner after each appointment.

I switched to another rheumatologist in the spring of 2013 when the first one stopped practicing in my town. Following the first appointment with this new rheumatologist I received a letter in the mail – it was a copy of the letter sent from that rheumatologist to my general practitioner describing the visit, his findings and recommendations. There were mistakes in the summary – mistakes in the description of previous treatments that I’d tried, mistakes in describing my symptoms, mistakes in the timeline of how things had gone over the past few years. I was referred to a neurologist at this same teaching hospital and during check-in the nurse asked if anyone other than the referring rheumatologist and my general practitioner should receive the summary letters from the neurologist and I asked her to put my name on the list – I’d like copies of those letters as well.

8 months later I reached the “fed up” point of the story – I was going to travel half-way across the country to see a Sjogren’s specialist and I knew there were mistakes in the letters from the latest rheumatologist. I also knew I hadn’t received copies of all of the letters. This time instead of having the medical records sent to the new doctor, I wanted them for myself. I wanted to read them. I wanted to see what other mistakes were being made in summarizing my symptoms, treatments and responses to treatment. And I found 16 mistakes in the summaries of 6 visits to that rheumatologist. He clearly wasn’t listening to me when I described things – he clearly wasn’t getting things correct when summarizing them in his notes of the visit. His mistakes were even inconsistent, he’d say things in one letter that contradicted what he’d said in a previous one. That has huge implications for me, he was documenting things incorrectly which may eventually have consequences with my health care, insurance and any disability claims that (I hopefully will never have to file) may come in the future.

I now possess a copy of the complete medical records -lab and test results, summary of each visit, the doctors’ findings and recommendations, and any phone or email contact (such as when I called with a question or increased symptom complaint) – from all of the specialists that I have seen related to my autoimmune disease experiences. I’ve read them. I’ve highlighted mistakes and inconsistencies. I’ve created a timeline of all my symptoms, treatments, responses to treatments and test results. This was a great help preparing for the trip I took to see the specialist – it helped us focus and have an efficient and productive appointment where I was confident I presented the entire story to the new physician.

Here’s what I learned through this process that I highly recommend to anyone with chronic illness or disease:

•  Get copies of ALL of your medical records.
  • You will need to fill out a form to request your medical records. Ask your nurse or check-in desk, or look on your medical system’s website for the record request form.
  • You may be charged for this service. Offices provide records to other doctor’s offices free of charge (most of the time) as professional courtesy, but individuals requesting their own records will be charged a fee, per page, for the copies and for shipping to you. (If you work with a smaller office and have a great relationship with the doctor they may provide them to you without charge – but if you’re requesting records from multiple doctors within a larger system you will be charged). I realize this places a financial burden on people that are often already struggling to pay the medical expenses, but we need this information so it is worth the cost.
  • Some places will send you electronic files. I prefer this because then I never worry about giving a doctor my only copy – I can always print another. There may still be a fee for electronic copies.
  • They will tell you the exact fee for getting your medical records (based upon the number of pages), and you will need to pay it before the records are sent to you.
• Your medical records should contain results of all lab work and tests as well as summaries of each visit with the doctor.
• Your full medical records will contain more information than is available through the online patient portals (such as “MyChart”), so even if you have access to your records through one of these portals you still need torequest full records. Different medical systems have their patient portals set up to automatically release various pieces of information and withhold other information until the doctor releases it. I have online access through two large medical systems and my physical records contain much more information thanis shown in those patient portals.
  • Request the letters that are sent to your general practitioner summarizing your visits with specialists. You can do this at the specialist’s office – ask them to add you to the list that they send the letters to – or at your GP’s office by asking them to send you a copy each time they receive one.
  • You may not get them all – I had this request on file with my third rheumatologist and neurologist and received approximately 1/3 of the letters from visits. However, now that you know you’re supposed to be receiving them, if you don’t get one following a doctor’s appointment you can call and let them know you didn’t get it and ask to have a copy sent to you.
  • Read your medical records. Find mistakes. Have the mistakes corrected.
  • If your doctor is consistently unable to listen and accurately paraphrase your symptoms and other information you provided in those letters, get a new doctor!

Kelly Morgan Dempewolf, PhD is a science educator with Sjogren’s Syndrome and possible Fibromyalgia (awaiting “documentation over time” of the symptoms by the new rheumatologist for the official diagnosis) in Topeka, KS. She is a 37-year-old wife and mother of two. She recently released a new book “As My Body Attacks Itself: My journey with autoimmune disease, chronic pain & fatigue
” and continues to write on her blog: www.asmybodyattacksitself.com

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