Collecting and Studying Copies of Your Medical Records

Excerpted from
How to Save Your Own Life: The Eight Steps Only You Can Take to Manage and Control Your Health Care
By Marie Savard, M.D., Sondra Forsyth

By the time a forty-something woman I'll call Louise arrived at the hospital in response to a frantic call from her mother, her father's breath was coming in short gasps. The doctor on duty told Louise that her father, a seventy-three-year-old we'll call Jim, had a potentially lethal arrhythmia which can be caused by a toxic reaction to the drug digitalis. But since Jim wasn't on that medication, his condition was a mystery.

"He is taking digitalis!" Louise said. The doctor shook his head. Louise's mother had brought a brown bag full of Jim's medications and there was no digitalis in it. Louise insisted that her mother had simply missed that one crucial bottle in her haste to get Jim to the emergency room. She asked the doctor to call the office of the group practice where Jim's medical records were kept. Unfortunately, it was past 6:00 P.M. and the offices were closed. Jim's life hung in the balance, and there was no way short of driving back to the house to look for the bottle of pills to verify that he was on them.

Before I finish this story, I'm going to tell you Louise's real name: Marie Savard, M.D. I was the frightened and helpless daughter in the above scenario. The incident took place in 1998 after I had been a physician for over two decades and a nurse before that. Yet my expertise was all but useless without access to my father's medical records. The good news is that the emergency room personnel started treatment based on the assumption that digitalis was the culprit. My father, John Savard, pulled through. Further good news is that he now carries a complete list of medications and doses in his wallet, and he has collected all his records from various doctors and facilities.

You should, too. The incident involving my father's arrhythmia underscores one important reason. The days when a family doctor had all your information in a manila folder, at the ready day and night, are long gone. In all likelihood your records exist piecemeal in an array of offices, computers, laboratories, and on microfilm at one or more hospitals. If you've moved around a lot, it's a pretty sure bet your records didn't follow you. To be safe, you need to locate as many of them as possible and keep a set of copies where you can get at it anytime you want.

I know that the idea of figuring out where the paperwork is and trying to collect it-much less understand it-sounds overwhelming, hut in the end, you'll be glad you made the effort. That's because even though we talk about the health care "system" in this country, there's nothing systematic about it anymore. There are now no clear lines of communication among the professionals who are trying their best to work within it. As my mother would say, the left hand doesn't know what the right hand is doing. That situation probably isn't going to change anytime soon. Plenty of critics have written reams of words railing against the deficiencies of the health care system, and reformers including Hillary Rodham Clinton have struggled to find ways to fix this mess. But so far, nothing has worked. I believe the solution is a grassroots effort, with each of us taking medical matters literally into our own hands.

I hope you won't wait until a crisis occurs to try to cobble together the information that could save your life. You're better off starting now. The last thing you need when you're sick and frightened is to have to think straight enough to remember where your old mammograms might be or what the names of all 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 this a kind of insurance policy that is guaranteed to pay out. After all, you fork over plenty for protection against such things as fire and natural disasters and theft which may well never happen. Why not spend a nominal amount of money and a little of your time to protect yourself against the very real possibility of medical mishaps?

Another reason for gathering your records is that you may find errors which could cost you insurance coverage, employment, or-in the case of allergic reactions-your life. In this electronic age, a lot of people are looking at your files. Some or all of your data are almost certainly in the computers of your insurance company and may even have found their way to a central data bank called the Medical Information Bureau. This organization identifies high-risk patients for insurers, but reportedly some 600,000 of the MIB files contain information that is inappropriate or just plain wrong. You wouldn't necessarily want a prospective boss to know that you're a recovering cocaine addict, and you certainly wouldn't want her to think you have Alzheimer's if you don't.