File folders, marching across the shelves in an orderly line behind the receptionist's desk, may be the first thing you see when you sign in for a doctor's appointment. While it's tempting to believe, the truth is far more troubling.
Paperwork from every doctor visit, every lab test, every hospital stay, and every prescription refill, the essential pieces of information that can keep you healthy and in some cases avert a major medical mistake, is scattered in cabinets and computers across the country. Although various proposals to overhaul the U.S. health care system would create a standard, electronic database of medical records for all physicians, such a system is still decades in the making.
A patient with a splintered health record is at greater risk of drug interactions or overdoses, and may miss out on critical preventive care or lab test results. For patients with chronic conditions, an incomplete record can make it more difficult to detect the gradual signs that the condition is growing worse or is no longer responding to treatment. Without a complete health record for reference, physicians may order duplicative and unnecessary tests that could delay care. And patients may face costly roadblocks with insurance coverage and payment without complete records at the ready.
There's no "master" file where all of this personal health information comes together and travels with you, unless you create that file yourself.
Patients should build these personal health records with a few goals in mind: Are you simply trying to keep the basic facts in one place to help you fill out forms in the waiting room? Do you need to keep detailed records of your medication and therapy to treat a chronic condition? Are you undergoing treatment for a complicated condition that will require extensive documentation for your insurance company? What's in the Record?
Experts agree on a few basic items that every organized health record should have: (1) names and phone numbers of your health care providers, (2) your insurance identification, policy number and phone number, (3) emergency contact numbers, (4) a complete list of your medications, (5) any allergies and (6) a list of your most recent surgeries or hospitalizations.
"I think the most important thing to have is the list of your current medications, including the dosage and why you're taking it," said Marsha Dolan, MBA, an associate professor of nursing and coordinator of the Health Information Technology Program at Missouri Western State University. "If a doctor sees you're taking a certain medication for a certain disease, it might alert your caregivers to something else they should be aware of when treating you."
When Barbara March's husband had heart surgery, "I just made a little one-page history of his important hospitalizations and the dates, a list of his doctors and his medications," the Missouri resident said. "I couldn't pronounce half the stuff he took, or how many milligrams; so it was either carry a list with me or carry all the bottles or prescription papers."
A personal health record can include anything from immunization records, lab results, X-ray films, notes from doctor's visits, and even advance directives. A brief family medical history, "especially for those with chronic conditions such as diabetes and heart disease," can be useful to include as a reminder to discuss the history with your doctors, Dolan said.
The blizzard of paperwork that descended upon Lillian Shah and Laura Messinger as they cared for their terminally ill sisters and mothers convinced them to write a guide to keeping health records: Keeping Healthy by Keeping Track. Tracking, Storing Your Medical Information
Under the 1996 HIPAA law, patients have a right to obtain copies of all personal medical information from their providers, but "it's not an automatic thing, you have to ask for it," Shah said. In most cases, you can ask the receptionist at a doctor's office to make copies of your records or lab results.
In the hospital, patient navigators or advocates can sometimes obtain copies for a patient still in the hospital, while the records department is more likely to make copies for patients after they have been discharged.
Which is better: a paper or electronic format? Electronic records can be easily updated, but some older patients may find them less familiar to read, and some physicians may not have the access to or time to read a patient's electronic files. With a paper record, patients may find it easier to control which items they share with their doctors. Travelers may also find that a paper record is easier to carry, although some keep their records on portable flash drives.
Consumers signing up for any Internet or Web-based personal health record should carefully check out the organization sponsoring the online record and the privacy protections that they guarantee. Using Your Records
You should use your record as a way to collect, double-check and complement the information you receive from your physician. At the very least, your records can help you speed through waiting room forms. But they can also prompt important conversations with your physicians. If your doctor writes a new prescription, you can use your current medication list to ask about any interactions with the new drug. Or if your records suggest it's time for a colonoscopy, you might make time to discuss the pros and cons of the procedure.
Shah uses her records as a reminder of the topics she discussed with her doctor at the last visit and the questions she wants answered at the next visit.
Don't assume that your doctor can, or will want to, access your online health records, or even keep your copies of your personal health record as part of their office records. Physicians can be legally responsible for anything contained in their own files, and may not want take a chance that your information is faulty or incomplete.
For the most part, doctors are receptive to patients who keep detailed health records, as long as the patients don't bring hundreds of pages to an appointment. Geriatrician James Cooper advises patients not to overwhelm providers with giant tomes of their medical history because "information overload obscures important items."
But as March and Shah discovered in their families, thorough health records can also be a gift to caregivers. "The time will come when you must turn it over to someone else, and wouldn't it be wonderful if you can turn it over to someone in good shape?" Shah said.