When M. Tray Dunaway, a retired general surgeon from Camden, South Carolina, journeyed to Mississippi to help Hurricane Katrina's victims, he saw refugees pouring into tentlike medical centers without the medication they required and not knowing when they had had their latest tetanus shots. Doctors had to waste many vaccine doses to ensure that everyone was covered.
Dunaway also recalls once treating a woman in an emergency room who had violent abdominal pains and didn't know whether her appendix had been removed during her prior hysterectomy. She had not made a note of this when talking to her surgeon afterward, and the information was tough for Dunaway to track down.
Do you at least have a piece of paper in your wallet with your family members' prescriptions, doses, and frequencies? How about for your elderly parents? Even if your records are tucked safely away in a family practitioner's office, that's no guarantee that you'll have them when you need them, or that this vital information will be shared among all the doctors involved in your care. To ensure your family receives proper care, you may need to take the medical record keeping into your own hands.
"I came to the conclusion that it was up to me," says Jill Burrington-Brown, practice resource manager with the American Health Information Management Association (AHIMA), a professional organization for those who manage health records. Even though she is in the business, Burrington-Brown started off modestly, keeping a paper record of her family's individual information, including that of her aging mother and father. Now, she has all these records computerized and carries them with her on a tiny, portable flash drive.
Personal records like these can help you avoid a host of undesirable circumstances. In some instances, for example, doctors have to order repeats of expensive or painful tests when patients aren't sure whether they've recently done the same tests for another doctor. In another scenario, when a patient enters the hospital, a special doctor called a hospitalist often takes over care; a patient's primary doctor is not involved. Often, the two doctors don't even know each other -- and don't communicate while the person undergoes treatment.
Furthermore, though some networks of doctors are electronically linked to hospital records and receive details of their patient's hospitalization, usually when the patient is discharged, his or her primary doctor must take the initiative to obtain the hospital records.
"There is no conversation between practitioners," says Julie Wolter, an assistant professor in St. Louis University's Department of Health Informatics and Information Management, who keeps her family's records on a flash drive. "The patient is the link."
Wolter also knows firsthand the usefulness of record keeping in school settings. She created personal health records for 110 teens who went on a trip to Europe. Those came in handy when one youngster was accused of having illicit drugs in his room, and a consultation with the flash drive showed he was prescribed medication for attention deficit disorder. In another case, two kids collided while dancing in a club and one needed stitches. His medical information was at hand and usable by the doctors in Prague.
Wolter's advice is to not agonize over everything you forgot or misplaced; just start today. If you can jot in past major events, such as surgeries, fine.
The Internet also provides some tools for those who want to create a more formal record. AHIMA has created the mother lode of personal-health record keeping, including free downloadable forms. On the AHIMA Web site are names of companies that will store your record securely in cyberspace (for a fee), allowing you to add information every time you see a doctor.
At the very least, your record should contain medications taken, dosage, and dosage frequency; dates of medical encounters and names of practitioners; notes on what was said or recommended; family medical history (for a government form to collect this information, go to the Web site My Family Health Portrait) and a listing of your procedures and surgeries. Of course, allergies and immunizations should be noted, too, in case an emergency responder accesses your record while you are unconscious. When you get test results, enter those.
"If you sell yourself as a good patient, you will get better, safer care," Dunaway says. This means organizing your complaint, he adds. If you have a headache, tell the doctor how much it hurts, how long you have had it, and any context (after eating ice cream, for instance).
Part of being an intelligent, organized patient these days is not being dependent on all your doctors and pharmacies to communicate and maintain a complete record for you. Even the highly touted Electronic Medical Record people have been talking about for decades is sketchily implemented. As things stand now, if you don't record the major particulars for yourself and for family members, no one will.