Full Disclosure: I have been given access to PatientBank.us as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.
Early on in my journey to an EDS diagnosis, I realized that one way I could empower myself was by accessing my medical records and using them to ask questions and learn more about the ever increasing string of diagnoses I was accumulating. The problem is that obtaining and organizing records is harder than it sounds. It is a cumbersome process, and we have an entire office filled with paperwork that needs filed in my series of binders to prove it. Even once you have obtained the information, and managed to organize it, it’s largely up to you to tote it between specialists if you want them to have a greater picture of what’s going on with you.
PatientBank is a service that seeks to solve this problem, allowing you to access and store your records with minimal effort from you. It really is easy to request records, and you can make multiple requests at once. In just a few months, I was able to request records from over 20 doctors offices and hospitals, and for the first time, have a more or less complete set of medical records for at least the last five years, and in some cases further back. Not only is this electronic format easier to deal with than all of the paper I was previously juggling, but PatientBank also allows you to share your records with your doctors by emailing them a secure link. PatientBank is also an excellent way to compile the necessary records required to apply for disability benefits, if that is something you need to do.
The most important document that I found through PatientBank was the report from the geneticist at the Cleveland Clinic that describes my differential diagnosis of Hypermobile Ehlers-Danlos Syndrome, along with recommendations for my ongoing care. This document had been sent to my primary care doctor, but because I never received a copy, many of my specialists did not have access to it – until now. Now everyone on my care team has this vital document and has a better understanding of me, because of PatientBank!
I am such a big fan of this service, and have a great appreciation for the work that the founders have done to build this incredible network, and to make it safe and HIPAA compliant (you can read more details about the safety piece here). I firmly believe that knowledge is power, and PatientBank was founded that by doctors who believe that allowing patients access to all of their information is the best basis for self-advocacy and patient centered care. PatientBank offers two models, a subscription service like the one that I trialed where you pay a flat rate for unlimited requests and storage (so worth it!), and a fee per request option. If all of this sounds too good to be true (it did to me!), check it out for your self! You can get one free request by using the code: zebrawrites at checkout on the PatientBank website.