New Tools Can Help People Keep Better Medical Records
By Laura Landro
The Wall Street Journal
May 26, 2000

IF THE HEALTH-CARE industry ever fully embraces the idea of electronic medical records that can be accessed via the Internet, we may all one day carry a "smart card" with our medical history on a microchip.

Until then, it is wise to keep your own old-fashioned paper records or store medical files on the hard drive of your home computer. Carefully kept and regularly updated files can supply the information you need to participate in your own medical care. In an emergency, they enable you to quickly provide to your doctors details of hospitalizations, copies of X-rays and electrocardiograms, and warnings about drug allergies or interactions.

They can also provide an extra measure of security against needless mistakes. Recently, the National Academy of Sciences' Institute of Medicine reported that medical errors caused more deaths annually than breast cancer, auto accidents or AIDS. Among the problems, it cited illegible writing on medical records and prescriptions, and incomplete information on patients treated by multiple practitioners.

LEGALLY, YOU ARE ENTITLED to copies of your medical records. The most obvious advantage of collecting them from the various specialists you're seeing is that everything will be in one place, including reports from consultations that might contain details omitted from your official medical record. Most doctors and hospitals record a patient's health profile using arcane "disease classification" coding systems designed to get reimbursement from insurers. Such data don't give a full picture of a patient's diagnosis or medical history. And critics say the codes are increasingly used as administrative tools rather than as guides to help in the care of patients.

"You probably assume that all the essential medical information has been recorded in your medical record, and that as you visit providers for care, all that information will be available to them," says Virgil Slee, author of a new book, "The Endangered Medical Record." "Unfortunately, this assumption is increasingly shaky."

Dr. Slee, a pioneer in medical-information management, advocates revamping the entire coding system to provide more detailed, patient-specific information in records. He also urges doctor and patient to build and review medical records together, with each keeping up his or her own copies for reference.

A number of Internet health sites offer elaborate record-keeping features, but for those who don't yet feel comfortable entering such private information on the Web, there are two new tools that can help that are among the more secure offered. Ira Denton, a Huntsville, Ala., neurosurgeon, and his wife Judith, a former NASA scientist, adapted a record-keeping system they had designed for doctors offices into an easy-to-use version for patients. The Personal Health Record program can be purchased in CD-ROM form for $34.95, or downloaded from the http://www.capmed.com/ Web site for $24.95.

THE PHR SOFTWARE allows users to enter and update medical histories for each family member; keep current records on procedures, test results and insurance data; and print out information. Users can even connect to the Internet to download pertinent medical articles into their files. In newer versions under way, patients will be able to put emergency information in an encrypted file on the Web. All personal data remain securely filed in the home computer or laptop.

Dr. Denton tested PHR by offering it to 1,000 of his patients when he retired from practice last year, and more than one-third accepted. Those patients are now "showing up in other offices around town with printed summaries of PHR information or even with their laptops." Dr. Denton says. "Bridging the information gap among disconnected providers is powerful assurance that everybody stays informed and nothing drops through the cracks."

Another option is "The Savard Health Record," a $24.95 book from Time-Life Trade Publishing developed by Philadelphia-based internist Marie Savard. Dr. Savard says the idea stemmed from her own concern for patients who were seeing several doctors at once or who showed up for initial office visits with no paperwork at all. The book, in the form of a spiral notebook, contains detailed instructions on how to get medical records from doctors, including sample request letters; how to read medical charts and understand reports such as blood tests and urinary analyses; a glossary of medical conditions and terms; emergency information; and health-at-a glance summary forms for quick reference. The binder style enables patients to insert copies of test results, consultations, discharge summaries and the like.

Ronald Russell, a 52-year old Philadelphia real-estate executive says he found the Savard Health Record "exceptionally useful" when he was making the rounds of specialists to determine why he was feeling numbness and fatigue in his legs. Ultimately, he was diagnosed with a nonmalignant spinal tumor and had surgery to remove it. He used the binder to keep track of CAT scans, bone scans and other tests. He says his file was often "better organized and more complete" than what the doctor he was seeing had received from the referring physician.

"You used to be able to rely on physicians to keep records and send them pre-emptively when it was required," says Mr. Russell. But today, he adds, doctors are seeing too many patients in too little time. "Now the responsibility for everything defaults to the patient."

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