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.
Data security, HIPPA and PII protection from end to end may not be at a acceptable level (see NIST)School district data systems certainly have systems security issues. Caution âš is advised here.
I’m so sorry for this family’s loss. It’s so true about health records, being a patient is kind of like having to fly a plane from the back seat. You wish you could either have some one else fly or let you in the front seat. It’s so hard to just get a record from one place to another and then to have it sent to you is a nightmare. Even when the staff at one place is working really hard, it can take ages to get records moved. I think part of the problem here, though, is how hard it is to get records kept in a central place. We use PAMF but even there, not all the records are accessible electronically, and moving records from outside is hard.
I’m really thankful for this effort, though. I wonder if anyone would please share more information about new meningitis vaccinations?
Thanks again to the Benatar family who continue to lead and inspire us to help each other, just as Emily did. Our daughter Carolyn captured it best when she said that Emily “taught her to be brave”.
Just to clarify, the website for Emily’s Way Project: http://www.ownyourhealthinfo.com/Users
does not collect any personal health data. You just add your name to the list, you can use a nickname, to affirm that you have mobile access to your health records. It can be full web access or a photo of vaccination records stored on your phone.
To all my friends who have still not signed up (you know who you are) do it today!