AMIA's broader strength is the insight it offers to emerging technologies, such as what researchers dub "consumer informatics." The consumer panel examined the gulf between patients and caregivers. Presenters described a digital divide that is only in part about Web access. It is an important topic, particularly given the widespread interest in personal health records and online data sharing with patients. As Rita Kukafka pointed out, a "mistrust of the medical community" can hinder the relationship. Kukafka, a member of the department of biomedical informatics at Columbia University, described how a public health program in Harlem is attempting to bridge the gap using Web technology. The project's Web site, "healthyharlem.org", offers a number of user-friendly resources and an easily navigable design. In her view, personal health records reflect a shift in patient roles. No longer mere "recipients" of services, connected patients will play a more pro-active--and responsible--role with clinicians who serve them.
Yet, the technology may be racing ahead of the public's capacity to embrace it. Consider the presentation by Catherine Smith, from the University of Wisconsin-Madison. She regaled us with her study of "obscene expression in consumer health." Smith analyzed 10,000 posts from three dozen bulletin boards that discussed health issues. Most people prefer slang or vulgarity to clinical terms. Mentioning what she labeled a "reaction against clinical terminology," Smith cited the flap around the word vajajay as an example.
Smith was far too polite to lambaste the linguistically challenged participants in medical chat rooms, so I will say what she did not. Until the American public can mature, and get past this juvenile mentality around sex, body parts, and organ system functions, we will not be meaningful participants in online personal health records, let alone in meaningful patient-physician relationships. The New York Times article quotes Carol A. Livoti, a Manhattan obstetrician and gynecologist, as saying that vajayjay and other euphemisms and slang offend her and can render women incapable of explaining their symptoms to health professionals. "I think it's terrible," Dr. Livoti said. "It's time to start calling anatomical organs by their anatomical name. We should be proud of our bodies."
Smith observed that public discussions of health issues often lead to either the "nursery or the gutter." Neither offers much value to clinical documentation. So as healthcare organizations open up their medical records to patients, they may encounter a vocabulary gap. Smith was too embarrassed to mention many of the terms she uncovered, so she listed them on a hand-out that itemized terms by clinical category, dictionary definition, and pertinent obscenity. The thought that such translation sheets would need to be part of the online dialogue with patients certainly gives pause.
AMIA Hot Quote:
"If you take 10 health records each with one error and collate them, you now have one record with 10 errors."
-An audience member describing a pitfall of regional data sharing at a RHIO panel.
Gary Baldwin is technology editor of HealthLeaders magazine. He can be reached at email@example.com.