Doctors Embark on $2 Million Effort To Clear Up ‘Skin Talk’

June 18, 2003

            Pimple. Blackhead. Zit. Hideous growth presiding over your image in the mirror. There are dozens of words you might use to describe the minor flaw on your skin – and each of your friends is more than happy to add a new word to the list.

            Dermatologists use an even bigger array of terms when describing skin conditions. But if doctors don’t draw upon the same pool of words as colleagues to describe the body’s largest organ, misinformation can spread as fast as a bad case of poison ivy.

            To help avert such a problem in an age when digital images and their written descriptions are quickly filling dermatologists’ computers nationwide, a team of doctors and scientists at the University of Rochester Medical Center has been chosen to lead a national effort to create a lexicon – a controlled vocabulary – that dermatologists around the world can turn to when culling medical databases, for telemedicine applications, or for simple information-sharing. The four-year, $2.1-million effort is funded by the National Institute of Arthritis and Musculoskeletal and Skin Diseases.

            The database that doctors envision is a bit like a jazzed-up electronic dictionary, with contributions and choices coming from doctors around the world. Words that appear to be jargon to the average person actually contain highly specialized information vital for treating a patient, checking a patient’s file, or scanning records for a trend. A skin condition that most people would call “a rash” is often described by a few dozen words, each of which is useful for pinpointing a different characteristic. Accuracy is crucial.

            Instilling some linguistic rigor into the dermatological Tower of Babel that is now commonplace is the task assigned to Arthur Papier, M.D., assistant professor of Dermatology. Papier is coordinating the efforts of 25 people from around the world, including seven researchers in Rochester. The team plans to organize disparate terms, developing a kind of quality control system for the words doctors use to describe the skin.

            “Today we take digital pictures of the patient’s skin, and we label that picture and put it in a database,” says Papier. “If we don’t have a shared vocabulary of diagnoses and their symptoms, it will be impossible to mine that database to look for patterns of disease.

            “Acne, for instance, has a number of causes, including some medications that predispose the patient to skin problems. Some doctors might label the problem ‘acne,’ while others simply call it a rash caused by a drug the patient is taking, while another might label it as an adverse effect of a drug without getting into detail.”

            The project will formalize about 10,000 different diagnoses of skin conditions and their synonyms, says Papier. In about three years a prototype will be available for doctors to test out, and shortly afterwards the final product will be made available to doctors around the world at no charge.

            Without such a tool, Papier says that communication about skin diseases is like an aviation system without effective air-traffic control. “Imagine if, every time an airplane flew to a different country, the whole aviation system was different – not just a different language, but different types of jets, different standards for safety, separate systems of classifying the weather. It would be chaos.”

            Some of the work could spin off into a project aimed directly at patients, says Papier, who is part of the University’s Center for Future Health. Having a controlled system of words to discuss skin maladies would be a key ingredient of a computerized system that could answer direct questions from ordinary people and alert them when further attention from a medical professional is warranted.

            In addition to Papier, at the University of Rochester the effort includes dermatologist and Dean Emeritus Lowell Goldsmith, M.D.; Egan Allen, M.D.; Scott LaPoint, M.D.; medical librarian Jennifer Byrnes; and administrative assistant Amy Lill. Also contributing is Glen Hintz, professor of medical illustration at Rochester Institute of Technology. Nationally the effort will tap the knowledge of 12 other dermatologists and four medical informatics advisers.

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