Less than three years ago, a very dear member of our own Washington University community contracted bacterial meningitis during her freshman year. Despite her earlier vaccination against meningitis, she had contracted the serotype B meningococcal disease that, at the time, was not covered by her earlier vaccine. On May 9th, 2012, Emily Benatar lost her life to bacterial meningitis at the age of 19; WashU students mourned the loss of their bright and talented classmate who had impacted so many lives in such a short amount of time. In order to carry on her legacy, the Benatar family chooses a project each year to better the community as a whole and make a difference in at least one person’s life, affectionately referred to as the Emily’s Way project.
The Emily’s Way project was born out of a commitment to honor Emily on her birthday, February 11th. Last year, they embarked on an Operation Gratitude-related project to send cards of gratitude to military personnel overseas, and ended up sending over 1600 of these cards to United States servicemen and women. Wanting to continue the success of their newly-formed tradition this year, Emily’s family has chosen a project very close to their heart—the unique and very pertinent “Own Your Own Health Info” project that encourages people to take charge of their own health by bringing the need for getting electronic access to health records to peoples’ attention. Information such as your immunization record, allergies, and current medications can be easily found using digital resources such as the Electronic Health Records website and their subsequent phone application, thus allowing you to access your own health history right at your fingertips.
When asked about the reasons for which “Own Your Own Health Info” was chosen as the 2015 Emily’s Way project, Mrs. Benatar remarked, “We decided on this project because we wanted to raise awareness and help prevent future cases of meningococcal disease, and we realized that backing up a step and helping people accomplish the broader task of understanding the vaccines they’ve had and other important health information might be a really important first step towards achieving our more specific goal.”
Mrs. Benatar is touching on an important, and unfortunately common, misconceptions of how vaccinations work. Many vaccines intended to prevent a certain disease (meningococcal disease, for example) can only protect against certain strains, and the inability to access this type of information can hinder receiving proper treatment in a timely fashion. In addition, the necessity of keeping track of every vaccine one has ever received, as well as the specific strains they work against, is a daunting task for anyone—especially the always-on-the-go college student. The “Own Your Own Health Info” project hopes to alleviate this burden by making this health information more portable and accessible to the conscientious individual.
But it quickly became apparent that the actual process of receiving an online version of your health records and entering them into a phone application is a fairly challenging task. Mrs. Benatar expands on a number of issues during the early stages of this project that prevented them from reaching their goal of 1100 Electronic Health Record (EHR) sign-ups by February 11th. One of the early difficulties was the lack of doctors’ offices that had signed up for online accounts or mobile phone apps, thus preventing their patients from obtaining online health records. And for college students who do not yet have an “adult” doctor (instead meeting with doctors in or around their college and/or their pediatrician from home), it was confusing to know which doctor to go to. But by far the hardest part in getting people signed up was the release form that is required for obtaining an online health records account and receiving an access code to the health record apps; college students simply don’t have that kind of time, and the 1100 sign-up goal was seeming more and more impossible.
To circumvent these obstacles, Mrs. Benatar decided that, at the very least, people should have immediate access to their own immunization records. She then came up with the idea of creating a GoogleDoc template for parents and kids to manually enter their own vaccinations and dates and then send this information to their phones. As the technological knowledge gap between parents and kids grew too large to ignore, however, even this re-invention of the original project became a difficult endeavor.
But in a serendipitous twist of events, a new approach to “Own Your Own Health Info” was born a mere two weeks before the February 11th deadline: “I was at a party talking to a woman I hadn’t seen in years, telling her about the project, and she said ‘Have them take a picture. Make it easy.’ That changed everything.” Mrs. Benatar soon realized that having a photo of your immunization records on your phone was a simple yet easy request, and definitely a step in the right direction. But most importantly, having even a picture of your immunization records fundamentally serves the overall purpose of the “Own Your Own Health Info” project: taking personal responsibility for your own health information.
This underlying mission of the project makes it all the more relevant for college students. As Mrs. Benatar put it, “Typically kids call their moms if they need to know something about their health. At some point, though, they need to take on these responsibilities for themselves. When kids turn 18 it makes sense for them to take on the responsibility of keeping track of their health records because at that point their parents no longer even have legal access to the records.”
Parents and students alike should take the time to discuss the importance of knowing your own medical information, including allergies, medications, vaccinations, past surgeries, and more. Even having the knowledge that you need a tetanus booster shot in the next few months could save a lot of pain and heartbreak for yourself and your parents in the future. The “Own Your Own Health Info” project can be a jumping-off point for parents and their college-bound children to start a dialogue on the “adult” elements of healthcare, such as finding a doctor, getting insurance, and getting access to your own records.
What can you do to not only participate in the 2015 Emily’s Way project, but also take part in the growing trend of digitized healthcare? Instead of relying on your doctor’s office to offer electronic health records, you can take the initiative and fill out Mrs. Benatar’s GoogleDoc template or take a picture of your immunization records and save it to your phone. Or maybe you could go even further and talk to your doctor about setting up an online database system. Start taking an active interest in your personal health information—be the only person in charge of your own body. And if you need any more motivation to become a part of the “Own Your Own Health Info” project, Mrs. Benatar has provided some quick and easy tasks that can jumpstart your journey into becoming your own health advocate: “Get a photo of your immunizations on your phone TODAY. Let us know you did this through our website. Do this as a gift to your parents. Or at least for yourself. If possible, set up an online account with a doctor and begin the process of creating a place where all of your health information is stored. Spread the word. THANK YOU!”