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Mike Ross

Sharing measles yes, medical records no

A few weeks ago I received a frantic call from the Boston Public Health department instructing me to go directly home until further notice. I was quarantined. If I didn’t cooperate, I was warned, I would be placed on a no-fly list. It wasn’t because I was carrying an extremely contagious disease, but, rather, because I couldn’t find proof that I had been vaccinated some 40 years ago.

The nurse on the other end of the phone explained to me that I might have been exposed to the measles while on a routine hospital visit due to my proximity to an infected patient. Not to worry, I explained, my parents loved me and believed in modern medicine. They had me vaccinated as an infant. I wished her a nice day and thanked her for the call.

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Not so fast. She needed a copy of my paperwork.

Usually when stressful things like this happen, I do what most 42-year-old men do: I call my mother. She remembered that I was vaccinated and recalled being handed a tiny blue folder with the information inside. “Excellent,” I told her, “please e-mail me a copy.”

“I don’t have it,” she said. “I think I gave it to you and your sister a long time ago.”

I called my sister but she didn’t remember getting anything from our mother, either. She did note that recently, she did receive a tiny blue folder, this time for her own son’s vaccination. How’s that for innovation?

I called my primary care physician, the hospital records department, my undergraduate and graduate colleges, and even my elementary and high schools. No one had copies of the records, hence my quarantine.

Of course, the great task of doing nothing, as Philip Roth recently commented, left me sitting alone in my house thinking that there has to be a better way. After all, how was it possible that my hospital didn’t have the immunization records forwarded from my pediatrician? Why, when you walk into your doctor’s office, are you always given a clipboard to fill out your medical history, prescriptions, and allergies? Don’t they already have all this information in a computer somewhere? The answer, of course, is no: That’s why health care reformers have, for decades, been clamoring for a national system of sharing information, something the 2009 economic-stimulus bill inadequately sought to address.

To help me better understand why this problem is so seemingly intractable, I contacted an industry expert, Stephanie Zaremba, who works at Athenahealth, a Watertown company that specializes in electronic health records management.

She explained that the health care industry doesn’t treat information as a commodity. Unlike other sectors that rely on comprehensive technology solutions to function and communicate, hospitals operate proprietary systems that speak only to their own network of doctors. It’s analogous to the personal computer of the 1980s that only worked for the person on whose desk it sat.

It gets worse. Hospitals would rather destroy medical records than preserve them because there is less liability for the doctor if there are no previous records to read. The regulatory environment encourages this behavior. The oft-referenced HIPAA (Health Insurance Portability and Accountability Act of 1996) only requires that medical records be saved for six years. It also mandates stiff financial penalties for any unauthorized information breaches, which sounds good, except the rules are so complex, doctors find it easier just to restrict the flow of information altogether. More insidiously, doctors have a vested interest in making it harder for patients to communicate with, and shop for doctors, in other networks.

Another federal program called Meaningful Use was created in 2009 to provide subsidies to hospitals willing to adopt modern technology. However, after lobbying from the industry, the regulations were watered-down to levels so anemic that qualifying for a subsidy meant only needing to transmit a single record, once, even if it was sent to a dummy account.

Some providers of medical-information technology, like Athenahealth, have formed an alliance with their own competitors to establish industry protocols and congruent information systems. But Epic, the company with the greatest market share, chose not to participate. Why should it? The lack of intuitive technology brings in greater revenue for the technology companies hired to unravel the mess.

Federal and state governments need to fix this problem. The feds should stop wasting money on hospitals that aren’t serious about modernizing their systems and protocols, and the state needs to recognize that privacy and electronic record-sharing aren’t inherently in conflict. Massachusetts need to require that patient records be kept longer, and that information is easier to access and utilize.

Or, we could just quarantine people every time there’s a scare. It’s starting to look easier than waiting for the hospitals to find a solution.

Mike Ross’s column appears regularly in the Globe. Follow him on Twitter @MikeForBoston.
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