Until I read my medical records, I didn’t really understand what was wrong with me.
Your medical records belong to you. Having your records in your personal possession is key to being able to understand and manage your disease and treatment—and to ask questions at every doctor visit. If you haven’t already gathered these records you need to do so, today. You will want a record of every visit you make to a doctor, as well as every test and scan you have ever had. Ask all of your doctors, past and present, their nurses or office staff for copies of these records. Include all of your blood tests, progress notes, surgical notes and scan reports, etc. You may have to pay a small duplication fee but it’s well worth it.
Don’t be afraid to ask for your records. Don’t be worried that you will insult your doctor when you go for a second opinion. A competent and educated doctor will not be threatened by a second opinion, which will require your complete records.
The Affordable Care Act (ACA) now requires most doctors’ practices, labs and hospitals to implement Electronic Medical Records (EMR) systems. Some of these systems include the ability for patients to set up a personal account via the Internet, log on, and access and print out their records and lab results from their home computer. However, earlier paper records may not have been scanned into the EMR system and often one hospital’s EMR system cannot talk with a different facility’s system. So, be sure to ask for physical copies of those older records when you are compiling your personal set of records.
Electronic medical records do not replace hard the hard copies you must get and keep.
When you receive your records keep all of them in chronological order in a loose-leaf binder. If you go to a new doctor or for a second opinion, copy the entire contents of your medical history file and give the copy (keep the original for yourself) to this doctor, ideally before your first appointment. (If you’re computer-savvy, scan them in and save them as pdf files, they can then be printed out as required.) Most physicians will want to see these records before they will even agree to set up an appointment.
Each time you have a new blood test, an appointment with a doctor, or a scan, obtain a physical copy of the results and add them to your personal medical history binder.
Many labs allow you to send the results to as many doctors as you name at the time the test is performed. However, never assume that your doctor already has a copy; bring a copy of the most recent labs and scan reports with you on your next visit. In states where lab and scan results are supposed to be released only to the doctor ask your doctor to write on the prescription an order for the lab to “release results to the patient.”
Most of us see several different kinds of doctors: dentists, cardiologists, podiatrists, etc. Be sure to send all of your prostate cancer doctors a copy of every test and scan from any doctor you see as soon as you receive them yourself. Don’t assume that treatment of one part of your body is unrelated to another part. Your prostate cancer doctors want to know about all of your treatments, tests, and medications, as well as the reasons for them. Make sure that every medical provider you use knows about your prostate cancer and your treatments.