My 15 year old daughter Morgan has been fighting a battle against a life-threatning autoimmune disease for over 3 years now. This year has brought quite a few challenges, including symptoms that have been difficult to get under control, side effects like meningitis from treatment, and the other typical struggles that come with managing a complex, systemic disease.
Last year, we went to see a super specialist at the National Institutes of Health (NIH), and before they would agree to see her, they wanted to have her entire medical history, weeks before the visit. While I certainly had some of her record before, I knew that I was missing huge pieces of it.
So, I began my journey of getting this information and discovered how difficult it really is to access. I became infuriated. It took hours and hours of work for me to go to each office to sign a form. I tried to do it at visits when I could, but that wasn't always possible. A couple of times, I actually had to drive to some of the offices just for the form. Then, I had to follow up.
One doctor took 6 "reminders" before the records were sent. One doctor NEVER sent them and I had to call his office from NIH because the records were really important to her evaluation.
However, once I got to NIH, I realized that they wanted the records for so much more than to make me run around like a crazy woman.
I was shocked to discovered that they had actually READ all of her history. I am pretty confident that no other provider had truly looked at her entire history. Not only did she read them, but she turned her entire histroy into a three page summary.
Wow! It was such an incredible tool to see, and became an integral part of Morgan's health story. I have used it so many times over the last year, and it really stuck with me. Morgan's chart is well over 2000 pages, and it is an incredible feat that this provider read it all.
However, most of her physicians have practices that have to get paid as part of our traditional payment system. They need to see as many patients as possible in a day to make a living. They will never read her whole history, but they did read this summary. And they loved it.
Here we are a year later, and it is time for us to go back to the same super specialist. This year, I got the request to send all records for everything that has happened in the last year, and I smiled. I was SO relieved to know that I already had it all. Not only did I have it all, but I had even read it all. I am much more confident in my ability to represent what happened because I have it at my finger tips. Not only do I have it at my fingertips, but I also have the visit summaries that CareSync Plus provided for me to share. I can't wait to see the reaction of the provider when they see how easy it is to process her information from the last year.
I can't wait to see if it allows us to move beyond understanding the past during the visit and whether it provides opportunities to discuss the future more.
As I was preparing to share all of her record with this provider, I happened to click on the hospital where she receives a lot of treatment in her providers section of CareSync. I saw that she has 114 documents for that one single provider. As I scrolled through looking at then names of the documents over the last three years, I got tears in my eyes.
First, just remembering all of that journey was emotional. But then, I sighed a huge sigh of relief. I have this information forever, and Morgan will have it forever. When she goes off to college and then moves into her adult life, she won't ever have to wonder what happened during her journey. She has it all at her fingertips. It is certainly useful to us now, but I can only imagine how useful it will be to her in the future.
A sincere thank you goes to the CareSync Specialists who worked so hard to get all of her information and to make it so useful to us.
Do you have access to your complete medical record? If not, I highly recommend taking advantage of CareSync's Get Started plan, where in less than ten minutes, you're well on your way to having your medical records. Check it out!