Information That Could Save Your Life
BY MARIE SAVARD, MD
Eighty percent of the information a doctor relies on to make an accurate
diagnosis and develop a treatment plan comes from the information in your
medical records. Unfortunately, important records and other health information
is often incorrect, incomplete, or simply unavailable. The more you get involved
in all aspects of your health care – including collecting and understanding
your own medical records – the better off you will be.
MY EXPERIENCE AS A DOCTOR
As a family doctor, I learned first hand the importance of my patients
taking an active role in their health care and by keeping copies of their
health information. Many of my patients had complex problems requiring multiple
doctors. Some of them were spending winters in the Sunbelt, which meant they
saw a different doctor for half the year, and a lot of them were seeing complementary
health care practitioners and using complementary and alternative therapies.
New patients often came for an initial office visit with no paperwork at
all. I had no concrete data to go on, such as consultation reports from other
doctors, X-ray reports, test results, lists of medications taken or immunizations
received, a history of allergic reactions, or hospital discharge summaries.
Doctors rarely keep comprehensive records to fall back on anymore and when
patients move or change jobs (and therefore have new insurance plans and
new doctors), charts are not routinely transferred. Even if you sign a release
to have your records transferred, complete records are rarely sent to your
new doctor, are lost, or just not sent at all.
Further complicating matters, rarely are your medical records simply located
in one office. Women often have their records split between gynecologists
and family doctors, for example, and hospital discharge summaries, specialist
consultation reports, and critical emergency room findings can all be scatted
throughout different locations. Worse yet, in large practices, consultation
reports and test results can get lost or filed in the wrong folder.
MY EXPERIENCE AS A DAUGHTER
A few years ago, my then 73-year-old father was rushed to the hospital
after my mother noticed that something was "just not right." By
the time I arrived at the hospital two hours later, my father was gasping
for breath, suffering from a potentially lethal arrhythmia. He'd had heart
bypass surgery only a few weeks before, but doctors on duty were at a loss
as to how they should treat him when the most likely culprit – a drug
called digitalis – did not turn up in the bag of medicines that my
mother had brought. "He is taking digitalis!" I said, but without
the bottle present and with his doctor’s office closed for the evening,
I was helpless to verify that fact. Luckily my story had a happy ending and
my father was treated as if he were on digitalis. However, not all of us
have the memory for the medications that we take – let alone our parents
take – in an emergency.
INFORMATION THAT COULD SAVE YOUR LIFE
I believe the solution to this crisis is for each of us to take
medical matters literally into our own hands by collecting and reading copies
of our medical records and then making them available to everyone involved
in our care.
You may be surprised to learn that you are ethically and legally entitled
to the information in your medical records. But despite this fact, many people
often fear that they will antagonize doctors and hospital personnel by requesting
records. However, when I speak to most doctors on this topic, they react
with enthusiasm and relief because they understand immediately that patients
who collect and study their own records and who make it their business to
become well informed about their health concerns will be in a better position
to be active partners with them instead of worshipping them or seeing them
as the enemy.
In addition to obtaining your records, you will need to review them in
detail. After reading their records, some people discover incorrect information
about medications and allergies. Others learn that their doctors overlooked
critical findings in X-ray or blood test results. Still others learn about
misleading or missing information in their records only after mistakes happen
that could have cost them their lives.
Finally, if your doctor questions or disagrees with your newly-found power,
maybe it is time for you to question whether your doctor is right for you.
The long-standing paradigm of the all-knowing physician as the authority
figure in a white coat simply doesn’t work anymore.
MEDICAL RECORD COLLECTION 101
I know that the idea of figuring out where the paperwork is and trying to
collect it – much less understand it – sounds overwhelming.
But in the end, you'll be glad you made the effort. The last thing you
need when you're sick is to have to remember where your old X-rays might
be or what the names of your medications are. Far better to take the time
and trouble to get your medical affairs in order right away and keep them
up to date from now on. Consider it a kind of insurance that is guaranteed
to pay out. Plus, if you don't collect your records yourself, they could
be destroyed within two to seven years by the people or facilities that
own them.
YOUR MEDICAL RECORDS BELONG TO YOU
People often ask me if they are entitled to their medical records.
The answer is, unequivocally, yes. While the original documents are owned
variously by health care practitioners, hospitals, and laboratories, you
are legally and ethically entitled to copies of the information in your medical
record. In fact, federal privacy laws include a section that emphasizes the
fact that patients are not only entitled to copies of their medical records
but can even suggest changes or corrections if and when it is appropriate.
At the state level, there are some laws spelling out patients' rights to
their health information and how much patients can be charged. There is no
state, however, that has a law saying you can't have your records. (See "California
Law on Obtaining Your Medical Records" below). It should be noted here
that you should also get copies of the records of your minor children and
anyone else you are responsible for, such as an aging parent, sibling, grandchild,
or unrelated child you have taken into your home. In these cases, you will
need legal power of attorney in order to access the person’s medical
records.
LOCATING YOUR MEDICAL RECORDS
Your records can be in a variety of locations, including doctors'
offices, hospitals, and laboratories. Let’s first take a look at each
of these possibilities individually.
Your Family Doctor. Make sure you ask for the following:
» Progress notes, including a running record of your height, weight,
and blood pressure. (The handwritten notes are generally not particularly helpful,
so no need to request those.)
» Typed summaries dictated by specialists you have seen, such as cardiologists,
gynecologists, or urologists.
» Discharge summaries from hospital stays and emergency room treatments.
» Results of all blood work and urinalysis.
» Pathology reports, including Pap tests and biopsies.
»
Radiologists’ reports, such as chest x-rays, mammograms, and bone density
scans. You may also want to get a copy of the actual X-ray pictures along
with the typed reports. This
is especially important for women who move and need to have mammograms read
and compared at another facility.
» Results of heart testing, such as EKGs, cardiac stress tests, and cardiac
echoes.
» Results of screening and diagnostic tests, such as allergy testing
and colonoscopy.
» Immunization history. If your doctor does not have this, blood tests
can determine which antibodies you have, should the need arise.
Specialists. If your family doctor has not received consultation
reports from specialists, you will need to contact the specialists directly.
Also, if you see a specialist regularly, such as a cardiologist, make a habit
of getting copies of your results on an ongoing basis.
Hospital Medical Record Department. In the event your family doctor
does not have hospital discharge summaries, contact the medical record department
at the hospital and specifically request the summary. Otherwise, you may
get (and be charged for) the whole file, which will be redundant.
Laboratory or Hospital Radiology Department. In the event that
your family doctor does not have laboratory results, such as Pap tests, biopsies,
or blood work, or radiologists' X-ray reports, mammograms, or bone density
scans, you should try contacting the lab or hospital radiology department
directly.
Complementary & Alternative Health Care Practitioners. Contact
all of the complementary care clinicians you may see, including nutritionists,
acupuncturists, physical therapists, and chiropractors, for copies of your
evaluations and protocols.
REQUESTING YOUR MEDICAL RECORDS
When gathering your existing records, work in reverse chronological
order. Don’t let yourself be frustrated by the potentially impossible
quest for long-lost records. Start with your next office visit and request
your results and summaries. Give your doctor a self-addressed, stamped envelope
and a sticky note with the current date, the records you want sent to you,
your name in legible block letters, your date of birth, and your signature.
He or she can then put the sticky note as a flag on your chart as a reminder
to follow through. Make sure your doctor understands that your motive for
requesting the records is simply to have a set for yourself so you can work
with him or her to reduce the risk of medical mistakes.
Next, let your other doctors and practitioners know what you are trying
to accomplish by writing a brief, courteous letter to each person or facility
that might have what you need. (See "Sample Medical Record Request Letter" below.)
In all correspondence, be sure to give your date of birth and the medical
record number (located on all X-ray reports) if you have it. You will also
need to be specific about which records you want so that you do not get a
stack of useless, scribbled notes along with the typed reports and summaries.
I also suggest that you include a check to cover the cost of copying your
records; $10.00 to $20.00 is usually enough. Whether or not your doctor accepts
the money, the offer will be appreciated. Also, if you are not having the
records faxed to a personal fax machine, I recommend that you include a 9x12
self- addressed, stamped envelope.
Lastly, make this behavior a habit. Be sure to get the results of every
test and procedure as they occur in the future.
Follow Up with a Phone Call
But what if you do not get your records in spite of the pleasant
tone of your letter? I recommend that you wait three weeks and then make
a follow-up phone call. If the office staff tells you that it is not the
doctor’s policy to send patients copies of their records, do not allow
yourself to be intimidated. Be polite but persistent. Remind them it is not
only your legal right but that the information may be critical to future
doctors involved in your care and that you are entitled – by law– to
this information no matter where you live. There is strength in numbers and
if we all start to ask for what is rightfully ours, giving patients copies
of their records will become commonplace.
CARRY A LIFESAVER WITH YOU
Once you have gathered your information, make several copies of your personal
health information list and carry one with you at all times. Your "lifesaver" should
include the following information:
»
A list of medical conditions, such as hypertension, diabetes, osteoporosis,
or even a heart murmur that requires antibiotics before dental work.
»
Serious adverse reactions to medication, bee stings, seafood, X-ray dye,
etc.
»
An up-to-date list of medications, vitamins, and herbal supplements, including
dosages and directions.
»
Significant family medical conditions.
»
Most recent immunizations for tetanus, flu, and pneumonia.
»
Living will information.
My dad now carries a lifesaver with him at all times and has shown it to
every doctor, pharmacist, and practitioner that he sees. (See "Health-at-a-Glance" below).
FROM THIS POINT FORWARD
In addition to maintaining as complete a collection of your medical
records as possible, I also recommend that everyone keep a personal health
journal. This is a daily or weekly record of everything that is going on
with your health, including changes in your condition, visits to practitioners,
tests taken, and medications prescribed.
Doctors often schedule no more than ten or fifteen minutes per patient,
so you need to be prepared to use your time with your doctor efficiently
(See “How to Communicate Effectively With Your Doctor” from the
Spring 2004 issue of Avenues). By keeping a journal, your health care practitioner
will be able to quickly review changes since your last visit, identify patterns,
develop more effective solutions, and will make the most of your personal
office visit.
After each office visit or phone consultation with your health care practitioner,
I recommended recording the following in your personal health journal:
»
Practitioner's name and the date of the visit or consultation.
»
Purpose of the visit or consultation, such as questions asked, tests taken,
symptoms addressed, or concerns discussed.
»
Office results of any tests or examinations taken.
»
Practitioner’s conclusion and advice.
»
Action plan items, including tests to take, medications to change, treatments
to receive, diet modifications to make, or follow-up appointments to schedule.
Also give your practitioner a self-addressed, stamped envelope to send you
your test results.
SUMMARY
With all this information, you will become every good doctor's dream:
a fully informed participant in the decisions and treatments that can help
you live longer and feel better.
Marie Savard, MD, is a nationally recognized women’s health expert,
author, and advocate for patient empowerment. She is the author of three
books, Apples & Pears: The Body Shape Solution for Weight Loss
and Wellness (Simon and Schuster, January 2005), How to Save Your
Own Life: The Savard System for Managing – and Controlling– Your
Health Care (Warner Books, 2000) and The Savard Health Record (Time-Life
Books, 2000). She is based in York, Pennsylvania and can be found on the
web at DrSavard.com.
....................................................................................................................
SAMPLE MEDICAL RECORD REQUEST LETTER
Dear Dr. Savard:
I've decided to take responsibility for collecting and keeping copies of
my medical records. That way, I'll be in a position to keep track of my own
health information and furnish pertinent data to everyone involved in my
care.
Thank you for helping me participate in my own care by sending me copies
of [list whatever the doctor or facility probably has, such as laboratory
tests, EKG and other heart tests, specialist consultation reports, hospital
discharge summaries, or operative reports]. Enclosed is a self-addressed,
stamped envelope along with my check for $15 to cover the expense of copying
my records [enclose a small fee if you have a lot of records and decide to
send this letter rather than give it to the doctor during your next office
visit].
Sincerely,
Lin Yu Tang
Birth Date: October 10th, 1895
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CALIFORNIA LAW ON OBTAINING YOUR MEDICAL RECORDS
» You have a right to access complete information about your medical
condition and the care provided to you. (California Health & Safety Code §123100)
»
Health care providers, such as doctors, HMOs, and hospitals, must permit
you to inspect your medical records during business hours within five working
days after receiving a written request. You are required to pay reasonable
clerical costs associated with locating the records and making the records
available for your inspection.
»
You are entitled to copies of all or any portion of the patient records that
you have a right to inspect upon a written request. Your health care provider
must provide copies of the records within fifteen days for not more than
$.25 per page (or $.50 per page for records copied from microfilm) and
any additional reasonable clerical costs incurred in making the records
available. All reasonable costs, not exceeding actual costs, incurred in
making copies of X-rays or tracings derived from electrocardiography, electroencephalography,
or electromyography, may also be charged to the patient.
»
Alternatively, your health care provider may send original X-rays or tracings
to another health care provider so long as it is done so within fifteen
days of your written request (which must specify the name and address to
whom the originals should be sent). You are responsible for all reasonable
costs, not exceeding actual costs, for providing these copies. A reasonable
deposit fee, to ensure the return of the original X-rays and tracings,
may also be charged to the patient.
»
You have the right to correct or comment on information contained in your
medical records. For each incomplete or incorrect item, you have the right
to attach a 250-word statement to your medical records. You must clearly
indicate in writing your desire that this addendum be made part of the
medical record. (§123111.)
»
Patients are entitled to one free copy of the relevant portion of their records
necessary to appeal a denial of eligibility for Medi-Cal, Social Security
Disability Insurance, or Supplemental Security Income/State Supplementary
Program for the Aged, Blind, and Disabled (SSI/SSP) benefits. "Relevant
portion"
means the records regarding services provided from the time you applied for
benefits until the denial of benefits. The records must be transmitted within
thirty days after receiving the written request and proof that the records
are needed to support the appeal.
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HEALTH-AT-A-GLANCE & EMERGENCY INFORMATION CARD
Along with your medical records, it is important to record the following
information:
» Any drug allergies or reactions
» All medical conditions
» All medications and supplements taken (name, dose, and directions)
» Date of last vaccinations (tetanus, pneumonia, flu)
» Contact information for your primary care practitioner
» Contact information for the person to reach in an emergency
» Whether you have a living will
» Whether you are an organ donor
» Whether you have assigned Power of Attorney
Keep one copy of this information with your medical records and keep one
copy in your wallet.
Source: www.DrSavard.com and www.MerckSource.com
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COMMON ABBREVIATIONS FOUND ON MEDICAL RECORDS
The following are some commonly used abbreviations found on medical records.
BM - Bone Marrow
BSA -Body Surface Area
Bx - Biopsy
cGy - Centigray (unit of radiation)
CXR - Chest X-Ray
FNA (FNAB) -Fine Needle Aspiration Biopsy (a type of biopsy using a thin
needle)
Gy - Grays (units of radiation)
IMRT -Intensity-Modulated Radiotherapy
LN - Lymph Node
Lx - Lumpectomy
MDR - Multi Drug Resistant
mets - Metastases (where the tumor has spread to secondary sites)
Mx - Mastectomy
NAD - No Abnormality Detected
NBM - Nil by Mouth (unable to eat or drink)
NED - No Evidence of Disease
O/E - On Examination
PRN - Pro Re Nata (“as needed”)
RT - Radiotherapy
Rx -Treatment
SAE - Serious Adverse Event
SC - Subcutaneous
SD - Stable Disease
SOB - Short of Breath
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