WARNING: Not knowing your medical information could be hazardous to your health! Ask for a copy of your test results and medical summary after each doctor visit, hospitalization or emergency visit. No news is NO news when it comes to your health information!
This warning label should appear on every patient health record, with each test or procedure we have, and with each office visit. We sign a mandatory form protecting the privacy of our health information, but we aren't provided a similar form that assures the availability of our medical records to the one person who needs them the most—you.
We aren't warned about the dangers of not knowing our own health information.
You have the power to get the best health care possible and even save your own life. The secret is to do for yourself or a loved one what your health care professional can't do. This means taking charge of your own health information. And taking charge starts with keeping copies of your medical records.
Although everyone should get in the habit of asking for and storing a copy of their medical records, it is especially important that we do this for a parent or loved one. Older adults may be seeing many doctors and other practitioners, have multiple medical conditions and take many and changing medications. Their medical information is often scattered across several hospitals, laboratories and practitioner offices.
No one but you can keep all this information in one place and available to those who need it.
When I wrote my first book in 1999, How to Save Your Own Life, most people thought it was their doctor's job to keep their health information and know everything about it. Health care professionals were often hesitant to share this information with patients, let alone give them copies of their records. (Ethically and legally patients were always entitled to this information.)
Today, with the widespread adoption of electronic medical records (EMR) and larger and larger health systems sharing this information, some of your medical records may be readily available to you if you through programs like MyChart and OpenNotes.
But having the information more readily available is not enough.
- You need to know and understand what is in your medical records.
- You need to check for mistakes and inaccuracies. (Hint: Your list of medications may be incorrect and test results may be misfiled.)
- You need your medical information and test results to keep you on track and inspire you to follow the treatments you have agreed to.
- You need to have in your hand and readily available a copy of your own medical information so you can share it with every practitioner you see. (Not every practitioner has access to your electronic health information.)
- No single electronic health record will have all of your personal health information—"cradle to grave."
Only you can collect and store all this information and see that it is correct and up to date. What I wrote in 1999 about the lifesaving importance of keeping your medical records still applies today. Here are some updates for 2019.
Information That Could Save Your Life
Did you know that 80 percent of what a health care professional relies on to make an accurate diagnosis and recommend the right treatment plan comes from the information in your medical records? This information is arguably more important than any other. Imagine the difficulty of making a diagnosis—let alone recommending the right treatment—if information is unavailable, incorrect or incomplete.
But how many of us actually keep our medical records? We keep financial, car and pet records, but most of us rely on strangers to keep track of our health information. The reality is that the only person you can rely on to safe-keep this information is you.
Marcus Welby Is No More
You may be wondering why your health care professional can't do that for you. Many of our parents grew up with a Marcus Welby, M.D. impression of a physician. The kind of doctor who had a few hundred patients he took care of from cradle to grave. He knew their names, he made house calls, and he kept all their records tucked in his desk drawer. Without even referring to those records, he remembered who was allergic to penicillin and bee stings, who was on insulin, who had high blood pressure and even who was overdue for a checkup.
The practice of medicine has changed and much of it for the better. Yet, it has grown increasingly complex and specialized. No longer can one health care professional do it all. My own experience, as well as recent research, confirms that the more you get involved in all aspects of your health care—including collecting and understanding your medical records—the better off you will be.
My Experience as a Doctor
As an internal medicine doctor, I saw the importance of my patients taking an active role in their health care and keeping copies of their health information. Many of my patients had complex problems requiring multiple doctors. Some were spending winters in the Sunbelt, which meant they saw a different doctor for half the year. A lot of them were seeing complementary care practitioners and using complementary therapies.
New patients often came for an initial office visit with no paperwork. I had no data to go on—no consultation reports from doctors, no X-ray reports, no test results, no list of medications or immunizations, no history of allergic reactions, no hospital discharge summaries. When I shifted from a solo practice to a group practice, my "panel" of patients was well over one thousand.
Today patients may be in a practice with thousands of patients and are just as likely to see whoever is available from a "panel" of health care professionals in a practice rather than the same doctor each visit.
Health care professionals also have more demands on their time including the burden of adding data to a computer—the electronic medical record. Your face time with your health care professional may be no more than 7 to 10 minutes. Your eye contact may be less because your practitioner may be focused on the computer screen rather than looking at you.
Your health care professionals are further hamstrung because they don't have the time to review all of your records, even if they have them available.
When patients move or change jobs and therefore have new insurance plans and practitioners, charts or electronic records are not routinely transferred or shared. Even if you sign a release to have your records transferred, complete records are rarely sent, and too often records are lost or not sent at all.
If you ask for your electronic records to be transferred to another physician or practice, the number of pages is often so great that it would take hours for a new health care professional to sort out exactly what the relevant medical history is. Women often have their records divided between a gynecologist and family doctor. When was your last tetanus shot? What antibiotic successfully treated your last urinary tract infection? What is your LDL cholesterol level? Who has your last Pap test result? Mammogram report? Recent blood test results?
If an older adult is lucky enough to see a geriatrician for a consultation or for their routine care, their consultation reports will likely be comprehensive and shared with your family doctor. Yet, there are far too few geriatricians trained in the U.S. and not nearly enough for every older adult with complex problems who could benefit from one.
Hospital discharge summaries, specialist consultation reports and critical emergency room findings should be sent or made available to family doctors, but that doesn't always happen. Worse yet, in large practices, consultation reports and test results often get lost, filed in the wrong folder or misfiled in your electronic health record.
My Experience as a Daughter
Let me tell you about my personal experience with this. A number of years ago my then–73-year-old father was rushed to the hospital after my mother noticed that something was "just not right." He had heart bypass surgery only a few weeks before. By the time I arrived at the hospital two hours later, he was gasping for breath, suffering from what I thought was a potentially lethal heart arrhythmia.
Doctors were at a loss as to how they should treat him when the most likely culprit—a drug called digoxin—did not turn up in the bag of medicines that my mother had brought. "He is taking digoxin," I told them. But without the bottle present, and with his cardiologist offices closed for the evening, I was helpless to verify that fact.
My father's primary care doctor and hospital did have an electronic health record, but his cardiologist was not part of the system, so the new prescription for digoxin wasn't included in his electronic list of medications. Luckily my story had a happy ending and my father was treated as if on digoxin. However, not all of us can remember 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 problem is a grassroots effort, with each of us taking medical matters literally into our own hands (or on our own computers) by compiling our own medical records. And the key to this is collecting and reading copies of our own medical records and 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—including the electronic information. Yet, many people fear that they will antagonize doctors and hospital personnel by requesting their records. Luckily, when I speak to most health care professionals today on this topic, they react with enthusiasm. 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 engage with them.
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 health care professionals overlooked critical findings in X-ray or blood test results. Still others learn about misleading or missing information in their records only after critical mistakes happen.
To learn more about the lifesaving importance of keeping your own medical records, watch the documentary film To Err Is Human, available on Amazon Prime.
If your health care professional questions your request for your medical records, maybe it is time for you to question whether your health care professional is right for you.
Do It for Your Parents and Loved Ones
As women, we make most of the health care decisions (and provide most of the care) for our children, our parents, our partners and ourselves. We are in the best position to ask for and begin keeping records for everyone in our care. What better gift to give a child going off to college or starting out on their own than a complete medical record? Imagine the comfort an elderly parent will feel knowing that you are helping them keep track of their medical information and test results.
This may sound daunting, but it doesn't need to be. My dad began carrying an emergency health card in his wallet listing all his medications, allergies and medical conditions. And countless times his up-to-date list of medications proved time-saving and lifesaving.
You can download a similar emergency health information form (called "Health at a Glance") to keep in your wallet next to your insurance card. Your health insurance may pay the bill, but your emergency health information could save your life.
Marie Savard, MD, is a trusted voice on women's health, wellness and patient empowerment. She currently writes a blog called Ask Dr. Marie, where this column first appeared. Her blog focuses on the challenges of medication overload in older adults and what caregivers can do to help. Dr. Savard is a former ABC News Medical Contributor and author of four books including her most recent, Ask Dr Marie: What Women Must Know about Hormones, Libido, and the Medical Problems No One Talks About. She lives in Philadelphia with her physician husband and has three grown sons.