Personal Electronic Medical Record

Due to my many relocations, frequent travelling  and the risks of accidents and episodes, I have decide to compile a personal electronic medical record.  Imagine the situation where a medical professional needs to treat me without my being able to provide adequate information verbally.  This could happen if I am unconscious due to an accident, or if I am in a deep state of confusion due to psychosis.  Furthermore, even when totally conscious with my full mental faculties, I usually find it difficult to communicate my situation to a new doctor.  In all these situations, it would be useful to have a personal electronic medical record to give to the medical professional.

Many people suggest to have their insurance information and a credit-card-sized list of emergency contact information in their wallet.  I find this to be insufficient for the amount of information, and I feel more would need to be told to medical professionals who know nothing about my situation.  A potential solution is presented here.

I now carry a USB drive that contains the information that is necessary.  I currently wear the USB drive on a chain around my neck, but I have seen drives that are credit-card-sized and fit in wallet.  There are even companies marketing these credit-card-sized USBs for personal electronic medical records.  At any rate there are sufficient USB options, that they need not look too tacky or be too bulky.  (An option besides USB is a SD card, which would nicely fit in a wallet.  However not all computers have SD card Readers.)

What sort of information do I find necessary for this personal electronic medical record?  Cancer.net suggests information to put in a personal electronic medical record.  Most of this information is straight forward to compile, and needs updating only once in a while.  My list of suggestions are

1. Photo of myself
2. Description of myself and my chronic illness
3. Basic info: contact info, insurance plans, etc.
4. Current doctors: general practitioner and psychiatrist
5. Family contact info
6. Current medications, dosages, reasons for taking them, and side-effects
7. Past medications, dosages, reasons for taking and not taking them, and side-effects
8. Medical history, in brief, with dates of surgeries, and other major events
9. Emergency plan for episodes

Items not included in my list that might be important:

• Family medical history
• Results from lab tests such as lithium levels, thyroid functioning, etc.

The hardest item might be (9). This is a plan, potentially worked out with family member and/or supportive friends, to deal with episodes that can hit when least expected.  My plan involves me being the front-line person for recognizing when things are starting to go south.  Some people prefer to have a friend recognize the beginning of an episode.  In either case, once an the beginning of an (potential) episode is noted, it is necessary to put the plan into motion.  Steps in the plan can include increasing the dose of some medication(s), consolidating your support system by asking family and friends to spend time together with you, having an emergency clause for when you will seek help at a psychiatric hospital, etc.  The most important aspect of a plan is to actually follow it when things begin to go wrong.  An important reason for having your plan written down is that this makes it easier to communicate your plan to new medical professionals.

So, I have said what information should be compiled and have suggested that the information be stored on a USB drive.  I have not suggested how the data should be stored.  If you go with a company such as ER Card you have to use their proprietary way of storing your data.  On the other hand, if you choose a do-it-yourself approach, you can store your information in the file format of your choosing.  I choose to use an HTML file, the format of files on the world wide web.  Since every computer sold in the last decade has a web browser for reading the file, this format is a logical choice.  Another equally good choice is a flat text file.  Yet another choice is a PDF file.

In the electronic age, it makes sense to have an electronic medical record that is kept up to date.  It also makes tremendous sense for patients to keep their own records, because this is currently the only way for multiple doctors to have access to the same record.  While keeping such a record might seem tedious, it is a way to communicate vital medical information when it is needed most.

If anyone else tries this out, please post about your experiences.  I will try to post updates on how this scheme is working for me.