Your Doctor Keeps Records…So Should You
Few things are more embarrassing than not knowing when, where and/or how you were treated for one ailment or another. Having a clear set or records regarding your health history makes for time efficient medical consultations and may prove life saving. Here’s a simple to follow check list of information you should gather in a handy file folder.
Remember, under the patient rights law, HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT OF 1996 (HIPPA), you (or your assigns, such as those you have given power of attorney to — check with your lawyer if you have a precise question about this) have the right to copies of all paperwork and the actual slides, x rays and any other related material regarding your healthcare and treatment. The following are suggestions — add or alter to suit your own needs.
A good idea would be to create two copies of the folder you are about to create…one to keep at home and the other to carry with you on all medical appointments. Imagine the time you save by handing a copy of your medical history to any new doctor you meet…and imagine the accuracy by having prepared this document prior to what might prove to be a stressful meeting.
About you:
Full legal name
Home address (plus your last home address if less than 2 years at current location)
Home phone number
Work phone number
Employer name and address
Supervisor’s name
Supervisor’s phone number
Occupation and job title
Proof of citizenship (passport or birth certificate) or current green card (in US)
Social Security number- place the card in a pocket in your folder
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
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 )
Educational information (highest level and schools attended – you never know who will ask this…why not write it down)
Information about each of your physicians and other providers, such as physical therapists, clergyperson, and social workers:
Full name
Name of nurse you will normally see
Office address
Office phone number
email addresses
Alternative phone numbers (beeper, cell phone, maybe even home phone number)
Office hours
Names of physicians who cover when your physician is not available
Procedure for out-of-office hours situations (non-emergency)
Procedure for out-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 number of person with durable power of attorney for health care purposes
Name, address, and phone number of person with living will
Your Legal Papers
Copy of your durable power of attorney for health care purposes (you can usually get a blank copy of this document in hospitals or sometimes at your doctors office)
Copy of your living will
The most important reason for these is to insure that your own wishes will be followed with respect to what decisions are made about your medical care if you become unable to make those decisions yourself. You may want close personal friends to do this rather than depending on an aging parent who may not understand modern medical technology well.
Discuss your specific desires with the people who are designated to carry out your wishes. Discussing what you want with the people who you expect to carry out your wishes is likely to help you clarify your ideas and help them to know yours, more precisely
Your Medications:
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
Write down how your doctor says that you should be using your medications. Often,, your physician will provide you with a trial bottle or sample bottle to get you started. This bottle will not necessarily have the usage instructions on it, so it’s especially important to write that information down in your personal notes.
At some time, you should transfer all the prescription information to a single sheet. 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. From time to time, have your pharmacist review all of your prescription and non-prescription medications and preparations to be certain that there are not undesirable interactions among them. Your pharmacist likely has a computer with up to date information that your individual doctors may not be aware of, especially about medications that other doctors may be prescribing for you.
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!
Your non prescription medications and nutritional supplements:
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 often 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 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
As with medications, you should be particularly careful that any non-prescription preparations do not interact with other herbal preparations, vitamins, or prescription medications. You should be certain to talk with your physician and pharmacist about any non-prescription preparations you may be taking.
Your Medical 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. Collect copies 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 copies from the last meeting each time you go for the next meeting. Get copies of:
The note that’s added to your chart at each visit to 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
Imaging records
Even though many medical centers are beginning 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. Be certain that you keep copies of all of the written imaging reports, too.
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 – 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 of your heart.
…..and copies of any other imagery created.
Your 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.
You might want to check with the laboratory where your tissue is analyzed 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. Since you may be having second and third evaluations of your slides and tumor blocks, be clear where they are and how they can be transported to other pathologists. You should consider keeping these materials in your own possession….discuss the pros and cons with your doctor and with the labs.
Your money:
Collect all those receipts reflecting your co-payments, your 20 percent payments, and/or your prescription payments. You may need to come up with one or more of these receipts on very short notice. Keep them well organized.
Your questions and answers:
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. Consider taking someone with you to each checkup or treatment and ask them to take good notes.
Your Folder’s Organization:
Each set of records should be organized chronologically. The earliest note should be first 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
go for evaluation/treatment at a different facility
For image records, bring copies of your actual films which must be kept flat (not curled). Keep these in a cool place.
For your pathology materials (slides and tumor blocks), consider this. 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 proper environment (ask your lab) 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.
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. Check with your lab at least twice a year…maybe on Valentines Day and on Halloween….two holidays about six months apart.
Consider times when you only want to carry your medical records and times you want to carry all of your records. There may be times when it is prudent to separate out your financial and personal records from your medical records.
A good set of records will go a long way towards relieving much of the stress and bother from your medical visits.