The parents of a 2011 Palo Alto High School graduate who died from meningitis have launched a campaign to teach people how to access their health records on their phones.
Lisa and Darrell Benatar started Own Your Health Info in honor of their daughter Emily Benatar, who died May 9, 2012, from bacterial meningitis while a freshman at Washington University in St. Louis, Missouri. Emily had been vaccinated against the disease, but she contracted a type for which there was not immunization at the time, her mother said.
The family hopes that their effort will save lives.
"Our goal is for 1,100 people to have their health records accessible on their phones by Feb. 11," Emily's birthday, Lisa Benatar said.
Many people currently access their health information online, but fewer do so using apps that are available for their smart phones. Mobile access could help people who need medical attention while away from home, such as college students or those on vacation or business trips.
The campaign is timely, Benatar said. California and several other states are experiencing measles outbreaks, which has heightened awareness of the importance of keeping vaccinations up to date.
Benatar thinks the phone apps help kids who are just out of the nest to take responsibility for their health.
"There needs to be a point at which you pass the torch. Kids do everything on their phones," she said.
Accessing health records on a phone is relatively easy. Three-step instructions are available at OwnYourHealthInfo.com. Health care providers already offer the apps: the Palo Alto Medical Foundation's app is called MyChart; Stanford Health Care's app is called MyHealth; Kaiser Permanente's can be found in a mobile app store by searching for "Kaiser."
At PAMF, people can also get help at the facility's information desk, Benatar said.
In lieu of downloading apps, parents can also take a picture of a child's immunization card or a photo of the form and text it to their child.
"It's super quick and easy," Benatar said.
The Benatars' website will soon have a Google document with a template for adding chart information, vaccines, medications, allergies and dates, she said.
So far, 537 people have completed the process toward the Benatars' goal. Doing so is already benefiting people as they discover gaps in their health maintenance, she said: "So many people said, 'My husband hasn't been to a doctor in five years.'"
Since Emily's death, there have been at least two outbreaks of serogroup B meningococcal disease, the type of meningitis Emily Benatar contracted, on college campuses: eight cases at Princeton University in New Jersey between spring 2013 and late 2014, and four cases at University of California at Santa Barbara from late 2013 to spring 2014, according to the Centers for Disease Control and Prevention (CDC).
The Food and Drug Administration licensed the first vaccine for serogroup B in October 2014 and licensed a second vaccine in January. More than 30,000 people have been immunized with the new vaccines at the two colleges, according to the CDC.
On average, 500 people die annually from the meningitis, and more than 4,400 are affected. About 10 to 15 percent of cases are fatal. Of patients who recover, up to 19 percent have permanent hearing loss, mental retardation, loss of limbs or other serious disabilities.