"The good news is that you look better than your X-ray," the doctor says in a joking manner. What's the bad news, I ask? "The X-ray shows that you are in the end stages of congestive heart failure."
I sit bolt upright on the gurney. My mind races. I am 47 years old. I have a wife and a 15-year-old daughter. I am on vacation. I am 1,500 miles from home. I have come into the emergency room of a hospital in Punta Gorda, Fla., because I thought I had bronchitis. I am dying.
It is 7 a.m.
The preliminary diagnosis was made by a doctor who, even in an emergency, had no access to any of my health records -- allergies, medications, known medical problems, or radiology and lab results -- in shaping his diagnosis. All of that information exists in digital form, locked away in my primary care provider's systems in Keene, N.H.
There's a flurry of data-gathering activity. A nurse begins building a chart for me on the fly, filling in the blanks. Do you smoke? Do you have a family history of heart disease? Another begins covering my body with electrodes and hooks me up to an electrocardiogram.
An intravenous drip goes into one arm. Copious amounts of blood are pulled from the other for lab work. In the ensuing chaos, the needle in my arm blows out. Blood spurts across my shirt. I feel a wet washcloth on my forehead, and as they wheel me back to X-ray, I begin to faint.
At 10 a.m., the doctor returns with "good" news. I don't have congestive heart failure after all. I happily accept my new diagnosis of bronchitis, take my prescription and return to my family, happy to be alive.
The medical data that might have saved me several hours of terror sat unused. It was unavailable to doctors outside of Dartmouth-Hitchcock's Keene clinic, except by mail or fax. And even if the clinic could transmit my records, Charlotte Regional Medical Center's systems were incapable of receiving them. According to its records department, the hospital still uses paper-based processes for its medical records.
Standards that could have helped solve these problems have been available since 1991. But 17 years later, the industry still doesn't follow them. Health care providers and systems vendors haven't agreed on any unique patient identification codes, universal schemas or global XML data models.
Moreover, they have no real incentives to pursue them. Providers see no direct economic benefit from adopting interoperable electronic health records. For vendors, open standards threaten services revenue and lower barriers to competition.
Issues arising from badly designed and poorly integrated health care IT systems harm or kill more patients every year than do medications and medical devices, says Asif Ahmad, CIO at Duke University Health System. Yet there's absolutely no control or regulation over them.
Until something changes, the onus is on the patient to take responsibility. Under HIPAA, I have a right to a copy of my health records. But the data needs to live online, where it's accessible, not in my suitcase or in a sheaf of papers.
A few providers offer access to a limited set of health records via the Web. Another approach is to entrust it to an organization such as Dossia, an employer-funded nonprofit that is piloting a secure, Web-accessible, privacy-protected and entirely user-controlled repository for personal health care data. That data, says Dossia President Colin Evans, is currently "scattered across Hell's half acre," in primary care, specialist, pharmacy, payer and other repositories.
Evans envisions a "break glass, pull handle" feature that would let me preauthorize qualified emergency-room physicians to access all or part of my Dossia health record in an emergency. If I arrived in the ER with a bracelet or card with a Dossia ID number, the hospital could use that number in conjunction with its unique authentication code to gain access.
It's not a perfect plan. But it's a hell of a lot better than what the remote ER has to work with today, which, more often than not, is nothing at all.
Robert L. Mitchell is a Computerworld national correspondent. Contact him at Robert_Mitchell@computerworld.com.