Patients' Perspectives:
Managing Your Medical Records
and Related Information

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This document is NOT intended to provide you with medical advice. You should consult qualified practitioners in your area for such information.

An issue that inevitably comes to all of us in the course of our treatment is where we saved this or that piece of information.  In this Patients' Perspectives essay, we present a list of the information that you're likely to need at some point.  Not all of this is actual medical information, but you are likely to need it.  And, because you're likely to be asked for various pieces of this information, we call the whole set "medical records".  Finally, we'll also suggest several ways of storing this nformation.

Basic information about yourself that you're likely to need sometime

• Full legal name
• Home address  (plus last home address if less than 2 years at current location)
• Home phone number
• Work phone number
• Cell phone number
• Employer name and address
• Supervisor's name
• Supervisor's phone number
• Supervisor's cell phone or pager number
• Supervisor's email address
• Occupation and job title
• Proof of citizenship (Photocopy of your passport or birth certificate) or your current green card (in US)
• Photocopy of your driver's license (in many states, this shows your organ donor status; if you have had cancer (or several other medical conditions) you may not be able to donate, but knowing your status helps the people treating you.)
• Social Security number (best to have the actual card if possible)
• Father's name
• Father's birthplace
• Mother's full maiden name (and whether she took your father's surname)
• Mother's birthplace
• Your marital status
• Spouse/significant other's name (maiden, if wife)
• Spouse/significant other's work phone number
• Spouse/significant other's cell phone number
• Number of kids
• If unmarried, name, address, and phone number of emergency contact person
• Name, address, and phone number of your clergyperson, if appropriate
• Your group number/name with insurance carrier
• Your personal identification number with insurance carrier
• Contact information for your insurance carrier (name, address, and phone number of review office)
• Educational information (highest level and schools attended - none of us understands why this level of detail is needed, but we're all regularly asked for it)

• Full name
• Name of nurse you will normally see
• Office address
• Office phone number and extension, if available
• Alternative phone numbers (beeper, cell phone, maybe even home phone number)
• Office hours
• Names and phone numbers of physicians who cover when your physician is not available
• Procedure for outside-of-office hours situations (non-emergency)
• Procedure for outside-of-office hours situations (emergency)
• Hospitals where physician has admitting privileges
• Address and phone number of hospital you will use
• Patient locator/patient status phone number at hospital you will use
• Pharmacy name, pharmacist's name, phone number, address, and emergency contact phone number (we put this item here so that, if you use a different pharmacy for each physician -- not a great idea in our view -- you'll be able to keep them straight more easily)
• Name, address, and phone numbers of person with your durable power of attorney for health care purposes
• Name, address, and phone numbers of person with yourliving will

• Copy of your durable power of attorney for health care purposes (you can usually get a blank copy of this document in patient relations offices or from a social worker)
• Copy of your living will

You will probably wind up getting more prescriptions than you can possibly imagine.  The critical information to collect about your prescriptions is listed below.  In spite of the fact that the information necessary to take the prescription should be on the bottle when you receive it from the pharmacy, you should make a note in your personal notes about the prescription and your physician's instructions for taking it.  That information in your notes should contain:

• size of one dose, usually in milligrams (for most pills and capsules) and in milliliters (for most liquids)
• how often to take the medicine, usually stated as number of times a day or every so many hours
• time of day to take the medicine, usually stated as morning, evening, or with meals
• potential side effects to watch for

At some time, you should transfer all the prescription information to a single sheet in your notes notebook so that all the prescription information is in the same place.  Particularly if you have several physicians providing your treatment, it's important to have the same information readily accessible for all of them so there are no oversights.  It is also wise, from time to time, to have a single pharmacist review all of your prescription and non-prescription medications and preparations to be certain that there are not undesirable interactions among them.

Caution:  If the prescription says to take the medicine with meals, be certain to find out whether that means one pill with some food at approximately the same time each day or literally one pill at each meal.  There is a huge difference between one pill and three pills!

Non-prescription medications

In addition to prescription medications, many people take non-prescription preparations at various points during their treatment.  These may interact with your prescription medications or may be detrimental to the type of treatment you are undergoing.  For example, taking antioxidants during radiation therapy is strongly not recommended because they will deplete the free radicals in your body which is how the radiation works to kill the cancer cells.    You should make a note of the following information about non-prescription preparations:

• name of preparation
• name of active ingredient
• USDA recommended daily allowance and/or Office of Dietary Supplement recommendation
• size of one dose, in milligrams or milliliters
• how often to take the preparation
• time of day to take the preparation
• potential side effects to watch for, which may indicate that you should change the dosing or schedule

Medical records

In this section, we'll describe many the various kinds of medical records you're likely to have.

Paper records

Each time you see a physician, physical therapist, or other provider whether for a checkup or some treatment (chemotherapy and radiation therapy come to mind), each time you have a lab test, each time you have an x-ray or scan, each time you have a biopsy or surgery, and each time you are hospitalized, some kind of paper report will be generated.  Having all of these available in one spot at certain critical times will be worth all the hassles you'll probably get as you collect them.  We strongly recommend that you collect things as you go.  This may not always be possible, for example, some physicians dictate their notes and it takes a while for the note to be typed up and put in your chart.  But, it should be possible to collect the copies from the last event each time you go for the next event.The items we've found necessary are:

• A photocopy of the note that's added to your chart at each visit to a provider, whether it's a physician, physical therapist, or other provider for a checkup or treatment
• Each set of lab results
• Written report of each imaging procedure
• Each written pathology report
• Discharge summary of each hospitalization (Warning: This may not be completed when you actually check out of the hospital. So, you may need to collect it from the hospital's Medical Records department the next time you're in the neighborhood.)

Even though many medical centers usually to create digital records of your diagnostic images of all sorts, it is usually possible to get copies of the "film" records of each image so that you'll have a complete set of your imagery in the event you need to produce them.   These are usually much more likely to get lost (unfortunately) than paper records.  One of our physicians has recommended that we reduce the volume of these materials by keeping only the most recent images plus any that show the before and after of changes that occur in your body.  The one exception to this is that you should keep copies of your baseline mammogram.  Be certain that you keep all copies of all of the written imaging reports, however.

If you can get a digital copy of your images, you should do so because these are generally the "originals" and thus are the most clear representation of what's going on in your body at the time the images were acquired. Additionally, you'll probably receive them on a CD or DVD along with the software to run them, in case you're interested. If your doctor wants an actual copy of the CD, giving him a copy of the original CD will give him a copy that is absolutely fine for use to read your images, whenever necessary.

• X-rays - these include chest x-rays, mammograms, and confirming x-rays for bone scans
• Bone scans - these usually include whole body scans, sometimes there will be "closeups" of particular parts of your body if a scan fails to pass the techs' quality inspection or, for example, if your arms are not completely scanned in the whole body scan
• Magnetic resonance imaging (MRI) images - these are usually of your head, but can also be of other parts of your body such as abdomen or extremities; there may be slices in several directions (see the description of imagery in another essay)
• Positron emission tomography (PET) images - these are usually shown as complete body images from several directions; often there will also be slices in several directions
• Computed axial tomography (CAT) images (also sometimes referred to as CT scans) - these are usually shown as slices that run from the top (closest to your head) to the bottom of the area being scanned
• Echocardiograms - these will usually be one or two paper pictures that resemble fetal ultrasounds, except these will have your heart in them

Slide and tumor blocks

Each time you have a biopsy or a surgery, whatever tissue is removed from your body will be sent to a pathology laboratory for analysis.  A written report, mentioned above, will be prepared which describes the pathologist's findings.  That report is based on examination of the removed tissue.  Usually, some of it will be made into slides.  Those slides are kept by the laboratory for a very long time.  The amount of time depends on the lab's particular requirements which are usually set by law and which vary from state to state.

In addition to slides, you will have tumor blocks.  These are the remains of the tissue received by the lab after your slides are prepared.  These are, perhaps, almost more important than your slides.  These can be used to determine certain characteristics of your tumor, long after the biopsy or surgery actually takes place.  For example, the tumor blocks can be used to determine whether the patient overexpresses the her-2/neu antigen which is prerequisite to having Herceptin prescribed for treatment of breast cancer.  Another example is examining the tumor blocks for the presence of the BRCA-1 and BRCA-2 genes so that information can be used for genetic counseling.

You might want to check with the laboratory where your tissue is analysed to understand how long they will keep your slides and tumor blocks.  Usually the length of time is quite long and almost certainly will be several years.  We strongly recommend that you leave these materials in the possession of the laboratory where the original analyses were carried out so that they are kept in an appropriate storage environment.

Receipts

 The last kind of information you'll be collecting is all those receipts reflecting your co-payments, your 20 percent payments, and/or your prescription payments. While it sounds ridiculous, you'll probably need to come up with one or more of these receipts on very short notice. Because of this, we strongly recommend that you keep them very well organized and we've come up with several ways to do this that are described below.

Information you'll create

As you go through your treatment, you'll learn to make lists of questions to ask your doctors so that you're certain to cover all your issues at each visit.  You should also note the answers to those questions as your doctor answers them.  You may want to ask your doctor to let you make a cassette tape of each session so that you'll be able to review your questions and answers later.  You will probably also be helped if you can take somebody with you to each checkup or treatment whose job it is to keep track of what's going on by taking notes on your behalf.

Organizing your medical information

We recommend that you keep the physicians' chart notes completely separate from all other records.  If you ever need to produce records to prove disability or for some other reason, these are likely to be the ones you'll need.  Some parts of the other paper records may be needed, but they're likely to be supplemental to the physicians' chart notes.  We strongly recommend that you keep the physicians' chart notes in a 3-ring, loose-leaf notebook, clearly marked so your kids won't appropriate the notebook for school!

Each set of records MUST be organized chronologically.  We spoke with several physicians while we were working on this essay.  Most of them prefer that the earliest note be last in the notebook.

The critical times that you're likely to need your medical record, which are basically all your physicians' chart notes, are when you:

• go for a second/third opinion
• apply for disability or extended leave at your job
• apply for Social Security disability
• apply for Medicare or Medicaid
• go for evaluation/treatment at a different facility

For your pathology materials (slides and tumor blocks), as we mentioned earlier, we strongly recommend leaving them at the center where your surgery or biopsy was performed.  However, there are several considerations you might want to think about.  Some people feel very strongly that they want to have control of these materials.  If you make that decision, it is important to keep them in a controlled environment so that they don't deteriorate.  If you determine that your slides and tumor blocks are going to be discarded at some particular time, you may want to retrieve them about a year ahead of the disposal date and keep them a safe place with a controlled environment.  A safe deposit box is both secure and in a controlled environment.  Your refrigerator at home is definitely NOT!

 If you decide to leave them with the pathology lab, you can keep track of where they are used.  For example, if you are going to have the tumor blocks examined outside of that laboratory, you can check to see whether the materials have been returned after some appropriate period of time.  If they haven't been returned, you can pursue the matter with the external lab or research project.  Another strategy is to authorize sending only one or two of your tumor blocks out.  Effectively, you're splitting the total material and reducing the possibility of their being lost in transit.

For your personal notes, we recommend keeping them in a smaller notebook, maybe the size of a  a DayTimer, that is separate from your other paper records.  Several of us have found that, since these personal notes won't be turned over to anybody else, this is also a good place to keep receipts from our copayments and prescriptions.  Others prefer to keep these receipts with their tax records.  If you keep them with your tax records, we suggest keeping each person's receipts separately and organized chronologically. Whichever way you choose, it's very likely that you'll need to dredge up more than one receipt to prove that you've made a particular payment.  In any case, keeping track of these receipts is important.

Finally

Now that you've collected all this information, we recommend having a short medical history to carry with you at all times.  You should be able to put it on the two sides of a single sheet of printer paper.  At short medical history, we have a Word document showing how to organize the short version of your medical history.  You can expand it vertically as you wish.  This comes in very handy when you have to see a new doctor, go to the emergency room, or possibly be treated by paramedics or EMTs.

In conclusion

If you have other kinds of medical information or if you've found other ways of organizing the information, we encourage you to share your ideas with us for inclusion in this essay.  We also encourage your comments on the content of this essay.  You can comment or send us information by answering our very short survey or by sending mail to:

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