Now they take pictures at Disneyland, not to Disneyland: Personal Health Record

Aaron Walbert is a teenager living in Colorado Springs, an hour and a half from his doctors. He has vacationed in northern Minnesota and in Disneyworld. He can use a computer like most members of his generation.

He has an exceptional past: in his fourth day of life, he suffered a stroke, and developed hydrocephalus. Since then, he has undergone numerous operations to drain the excess cerebrospinal fluid, via a shunt. While on vacation several years ago in northern Minnesota, he began complaining of headaches and nausea, making his mother worry that his shunt had malfunctioned. At the hospital in Duluth, two hours away, no one could retrieve his chart from his Colorado hospital. He had to drive 3.5 hours away to another hospital so a neurosurgeon could determine whether surgery was needed. Over time, his mother has realized there are many false alarms, because everything from the flu to a poor night’s sleep can mimic the failure of a shunt. Even so, she began to lug around the large, heavy envelopes of radiology films wherever they went, out of concern that the shunt could fail at any time.

But this hasn’t been necessary for the last two years. The Walberts acquired an electronic personal health record (PHR), so they could access his health records anywhere. If Aaron gets sick far from home, doctors at the nearest hospital can download his latest MRI scan for comparison. And they could have anything else in his medical record at their fingertips. That was helpful two years ago, when Aaron got sick at home. Mom took him to a local radiology office for a brain scan, and had it compared to the most recent scan, available online via the PHR. When the doctor realized the scan was unchanged, Mom could bring him home without worry, without making the long drive to his hospital.

Advice to rural families with complex medical needs: Get a Personal Health Record. Having your up-to-date medical information on hand anywhere can be a godsend.

Read a story of how a wife’s medical information on her husband saved him, or read Dr. Orly Avitzur’s story in Neurology Now.