A few minutes later, U.S. Navy veteran and former Oakland (Calif.) police officer Jason Geiser verged on tears when he spoke of walking down the aisle to be married. He had just risen from a chair and walked to the front of the stage aided by a computer-controlled exoskeleton.
Like many moms with a sick daughter, Kennedy experienced the frustrations of trying to gather her child's medical records from disparate sources.
What separates Kennedy from most parents is that her daughter, Grace, was adopted at age 2, and Kennedy is a consummate pro at medical records wrangling.
Out of necessity, and in a hurry, Kennedy tenaciously tracked down and compiled a cradle-to-age-11 medical record for her daughter who, at that late age, had been diagnosed with cystic fibrosis.
She relentlessly tracked down those portions of her daughter's records that were still available; some had been destroyed. The compendium of records she amassed was central to her daughter's subsequent treatment plan, she said.
The inheritable condition had been missed, Kennedy said, due to an incorrect entry in her daughter's medical record, handed over to her at adoption when Grace was age 2. The records included a statement from her birth mother that there were no inheritable conditions in her family history. That inaccurate statement had been copied and pasted into all of her subsequent records for nine years, Kennedy said.
Today, 12-year-old Grace wears a FuelBand personal tracker that “helps her know how much exercise she needs to maintain optimal lung function,” Kennedy said.
“Gracie is one example why a commitment to the consumer must be made,” Kennedy said, by making patient data available to them, “where and when they need it.”
Attendees also saw Geiser—who lost use of his legs due to a spinal cord injury from a motorcycle accident—rise from a chair and walk to center stage with assistance from two arm braces and a computerized, motorized exoskeleton from Ekso Bionics, Richmond, Calif.
“For me, to be able to put what walking means in words, it's difficult,” Geiser said. For others with spinal cord injuries, knowing a device like this is available, “It gives them hope and opportunity. I think that's what we're all looking for.”
When Geiser began working on his rehabilitation, “I thought, just maybe, I might be able to walk my daughter down the aisle. She was (age) 10 at the time, so it was a bit of forward-thinking. What I didn't know at that time, that two years later, it was going to be me walking down the isle with my wife at my wedding. It was phenomenal,” he continued. “Amazing.”
A computer in the backpack of the apparatus takes readings from 96 sensors 500 times a second, which enables Geiser and his physical therapist to operate the apparatus. The device, which generates more than 20 gigabytes of data a month, uses Wi-Fi or cellular technology to transmit information back to a cloud-based monitor, which enables caregivers to monitor a patient's progress and pinpoint system glitches.
Follow Joseph Conn on Twitter: @MHJConn