The first time that I took my husband to the hospital I was taught an important lesson on one of the best ways patients can advocate for themselves. Earlier that day he had visited his primary care physician and had blood tests done. That evening his doctor called and urged him to go to the hospital because the results of that test showed his red blood cell count was very low. Before we left for the hospital I grabbed a file folder with his complete medical records. He happened to have all his records at home because we had just moved to California from Colorado and before moving he had requested a copy of everything from all his physicians there.
When we met with the doctor in the emergency room my husband answered her questions and told her his medical history. The doctor could see his test results from earlier that day. When I mentioned that we had his records from his previous doctor she lit up. She looked through the history of blood tests over the past year and said this changed her orders. As she left the exam room she said, "Having these records really helps, thanks!" That brief interaction struck a chord with me and I realized how important it is to keep a copy of your medical records.
I always encourage clients to request a copy of their medical records to keep for themselves. There have been dozens of times that having them on hand while meeting with a physician has been very helpful to them. The way our medical system works in this country, there is not one central place where records and other information is kept on a patient. Sometimes records are available from more than one physician, but only to other physicians within that particular medical institution's network. In the emergency room that night the doctor could see my husband's test results from earlier that day because his primary care physician happened to be on staff at that hospital. If we had gone to a different hospital they would have had to test his blood count again before making a decision on treatment and that would have delayed his care by hours. We were lucky the closest hospital was also where his primary care doctor was on staff.
The only centralized place to keep records is with the patient. While it is true that, when requested, medical records can be forwarded to other practices this can take time, often days, and mishaps regularly happen. So whenever possible having them with the patient is best. These are some of the best practices I've learned to make sure your records get to the right provider when needed.
First, I prefer to always have a paper copy of records on hand whenever possible. If you can hand specific things to the physician while they are assessing the patient, it is most effective. Physicians and all healthcare workers are usually very busy. They often don't have the bandwidth to look for or read through a patient's complete record and often, even if they do look, not all the records are available. If you can hand them a particular test result or summary from another provider it makes it easier for them to quickly assess your situation and provide you with the best care. While having electronic copies can work, sorting through the pages to find the right section can often take too much time. You may also run into issues with internet access or difficulty reading things on a small device like a tablet or phone. And many places will not accept a thumb drive with records. Good old fashioned paper, in a binder or folder, works best in my experience.
The best way to create a good binder or folder with all the patients information is to always ask for a copy of every test and result when you are leaving a provider. This is especially important when you know you will be getting follow up care with another provider.
If the patient is in the hospital, on the day of discharge ask your nurse for a medical records request form. On that form ask to have a complete copy of your medical records (since your last request) available for pick up as soon as possible. Most of the time it will take a few days to a week to get these records. If someone other than the patient is going to be picking it up make sure that person is specified on the form. Write across the top of the form "Will Be Picked Up By Jane Doe". If possible have someone drop off the request form at the medical records department and have them ask nicely when the records will be available for pick up. Call the medical records department the next day and politely ask when the records will be available for pick up and confirm who will be picking them up. If the patient is visiting a physician ask the nurse or medical assistant for a copy of the records after you see the physician. Depending on the size of the office they may be able to print it off and give it to you right away or have you fill out a request form. Again ask nicely and let them know you appreciate that it takes extra time for them to get you a copy. By law the facility has 30 days to respond to the request but I've learned that asking nicely and following up with a gentle reminder often expedites the process.
There is not one right way to organize your records in your binder or folder. I generally prefer to keep things in chronological order with tabs separating the records by facility. Others may find it best to sort things into categories by test results, notes, and other major categories. Find a system that makes sense to you so that you can easily find things quickly when you are meeting with a physician or other provider.
Many hospitals and medical systems offer online access to patient records. This can be incredibly helpful. However I caution you to review them regularly and make sure everything is available to view. Usually the complete record is not available online and things can be missing. I recommend you still print off everything a put it in your binder/folder. You may not be able to access the files electronically when you need them.
Another word of caution, most of the time when you ask for your medical records you will be told that it isn't necessary to get your own copy. You will be told that they will forward your records to other providers automatically. In my experience this just isn't reliable. This often takes more than a month and many times it doesn't happen. Several times and at many different institutions I was told that records or test results would be forwarded to another physician. Even with calling and receiving verbal confirmation that it was sent and also having verbal confirmation it was received by the other facility, more than once I have been at the appointment and the records weren't there. It is extremely frustrating and it is not unique to any particular facility or healthcare provider. It happens often and it happens everywhere. As the patient, you will be the one frustrated and wasting time if your physician does not have the information s/he needs for your appointment. In my experience it is better to assume the worst and get your own copy, no matter what you are told.
Keeping your own copy of all your records takes a bit of extra effort and in a more perfect world this would not be necessary. However, medical facilities are institutions that are run by human beings. We all know that human errors and mistakes happen every day. One of the best ways a patient can empower and advocate for themselves is to take control of their records and speak up and ask providers to review them.