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 9×12 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.
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].
Lin Yu Tang
Birth Date: October 10th, 1895
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.
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
SAE – Serious Adverse Event
SC – Subcutaneous
SD – Stable Disease
SOB – Short of Breath