Saturday, August 21, 2010

Medical Information Binder

Okay, we talked about your emergency wallet card, so I think now we will go to your medical binder: who needs it, and what should be in it. I keep a medical binder, and I know a handful of people that also have one, and it can make your life a lot easier. Now, I am not talking about the medical file that most people have at home, where you keep all your doctor information, your insurance stuff and your receipts.

Please keep in mind that I am not a medical professional. Sometimes I jokingly refer to myself as a “semi-professional patient.” This is more of a been-there-and-done-that road weary kind of advice. Okay? Okay.

(Here is my first attempt at a blog jump, here we go!)


Who?

Well, it is completely up to you. Folks that see different doctors and specialists, folks that are tracking down an illness, folks that use medical services that are not networked together for sharing information – these are all people that may want to consider it. For example: if you have ever had to do a duplicate MRI because the results weren’t available – you should probably have a binder! If you have a medical condition a little on the complicated side and you travel outside of your medical network, you may want to consider this. Patients and parents helping their kids through a medical journey may find that this gives them more of a sense of participation and agency to create one.

These are just suggestions of mine, your mileage may vary. You may also want to talk to your doctor about whether or not you need one, and what the doc thinks you should keep in it.

There is a small amount of work involved in setting this up. I believe that compared to the worry saved by having such a binder, and the work and time saved by having it, and the potential gratitude and labor saved on the part of medical staff – I have found mine to be worth far more than the effort used to create and maintain it.

Well, it is completely up to you. Folks that see different doctors and specialists, folks that are tracking down an illness, folks that use medical services that are not networked together for sharing information – these are all people that may want to consider it. For example: if you have ever had to do a duplicate MRI because the results weren’t available – you should probably have a binder! If you have a medical condition a little on the complicated side and you travel outside of your medical network, you may want to consider this. Patients and parents helping their kids through a medical journey may find that this gives them more of a sense of participation and agency to create one.

These are just suggestions of mine, your mileage may vary. You may also want to talk to your doctor about whether or not you need one, and what the doc thinks you should keep in it.

There is a small amount of work involved in setting this up. I believe that compared to the worry saved by having such a binder, and the work and time saved by having it, and the potential gratitude and labor saved on the part of medical staff – I have found mine to be worth far more than the effort used to create and maintain it.

Personal Information

First thing put all your vitals down, just like your wallet card. Use it as a template (name, address, doctors, conditions, prescriptions and over-the-counter drugs you take, blood type, allergies – you did make your wallet card, right?). Then, make sure you list the person(s) you want making decisions for you if you are unable to do so yourself. You should also list your religious preferences, especially if they are relevant to health care situations. This is also a good time to find out how your area determines your HIPAA compliant medical representatives, especially if you are in a relationship that is not recognized by your state (unmarried by choice, same-sex partners, etc…). I may do another article just about that, as I know I will not do it justice here.

Second, put a list of the names and numbers of folks that should be contacted in case of a medical emergency. You may have all this information in your head or on your phone, but those may not be available at the time. This makes it easier for you, and for whatever person may be with you at the time of a medical emergency. Mine is broken down into people that should know right away (immediate family and a few close family friends), people that should be informed of a emergency at a decent hour. If you have someone abusive in your life, and you do not want them to have any part of anything, list that here too. It is not medically binding, but it lets your family and friends know (example: I have one person I want no where near anything to do with me, and my family is well aware of that fact and the history that produced that fact).

Lastly, you should consider keeping a copy of your advanced directives. I will talk about ADs in a future post, because I think they are incredibly important, but I also understand the reticence that people experience when the thought of dying is presented.

Medical Information

Alright, now we get into the meat of it. I try to keep all of my most recent tests and scans and such in my binder. There are several ways to go about this. It always helps to explain to your health care professional what you are doing and why. When I have done this, only one grumpy old neurologist protested, most understood the hows and whys of it and even offered advice on what was important.

With most blood tests, they are taken in a lab, and the results are sent to your doctor. I find the best time to ask for copies of these is when you are discussing the results with your doc. If you are doing it by appointment, it can make things easier if you go ahead and tell the scheduler that you will want it (they may go ahead and make it ahead of time for you). Ask them to mail you a copy if you discuss the results over the phone. These results can be important even if they show nothing unusual. So whenever you have a test run, just make it a practice to get a copy of the results.

MRIs and other scans can be a little trickier to get. Usually you will deal with a radiology tech. It has been my experience that they are prohibited from discussing anything they actually see in your images with you. So do not be disappointed or rude when they won’t do that. Sometimes you can get a CD of your scans from them. If not, you can ask either the doctor that ordered them, or the radiology department for them (they may charge a small fee for the privilege of being able to see your own body – and I do understand both sides of that argument).

I also keep Emergency Room discharge forms in my binder, as it helps me and the professionals I am dealing with to see what has been happening. Not so much anymore, as I have only been to an ER once in the past year (and I am oddly proud about that).

Organization and Use

It is up to you to decide how to organize your information. I kept mine in the order in which they occurred, with the most recent tests and whatnot up front, right behind my personal information, with my AD in the back. You can find binder sleeves that hold CDs at most office supply stores.

Now a days I do not use my binder much, but I tend to make sure it travels with me when I know I am going to be out of network, in case of emergency. I also take it with me to new docs, as I know they are just then getting access to my information, and will not have it already in file. Before my network was linked up to share information, I also took it with me to every office visit and every ER visit.

I find that a binder like this is incredibly helpful if you need to see a doctor out of your network. Now, it may not prevent all duplicate testing, for example if a neurologist wants your brain images from a 3 Tesla MRI instead of the 1.5 Tesla images you have. Or if a rheumatologist wants a more comprehensive blood panel drawn. A test result may also be too old, and a doc may want a more up-to-date result.

I need to stress that it is important to keep your binder updated. Offices may change phone numbers, you may need to add new specialists, and the over-the-counter/prescription meds you take may change.

Well, I have gone on long enough, I think. Hopefully this has helped you consider whether or not you want a medical information binder, and how to go about putting one together if you do decide you want to have one. If you have any questions or suggestions, please feel free to leave a note in the comments. They are moderated, but I will get to them as quickly as I can, promise!

Edit: spelling.