It’s normal to panic in times of crises, especially when it involves the health of a child. But when you have children with special health care needs, staying calm and communicating accurate information can mean the difference between life and death.
Parents will now find that a little easier, thanks to the Midwest Emergency Medical Services for Children Information System (MEMSCIS), a joint project of Children’s Hospitals and Clinics, the University of Minnesota, and the EMS Regulatory Board.
MEMSCIS is a web-based medical records program for kids with chronic conditions, providing secure online access at the touch of a finger. Originally designed to support pediatric cardiology patients, MEMSCIS now services children with genetic, metabolic, and endocrine disorders as well. Doctors and nurses are able to update their patients’ MEMSCIS records, and parents can print out an updated copy to have with them in the event of an emergency.
Amy Elletson of Hugo, Minn. uses MEMSCIS to keep up-to-date medical information on her 1-year-old daughter, Emily. Emily has a rare genetic disorder called LCHAD (Long-Chain 3 Hydroxyacyl CoA Dehydrogense) deficiency which results in her body’s inability to break down fat.
Emily usually needs medical attention when she gets sick, and MEMSCIS can expedite treatment in the event she ends up in the emergency room. Housed on the web site, the emergency information form (EIF) contains up-to-date information on Emily’s condition, including her physician’s course of treatment and any medications she is on.
“It’s difficult to explain LCHAD to someone,” says Elletson, “So I keep a copy of Emily’s EIF in the diaper bag and let that do the explaining for me.”
The EIF is the heart of the MEMSCIS project. Both parents and their children’s physicians can update information on the form by going online from any computer with Internet access. Emergency medical personnel can log on to the site when they are treating the patient. In the event that a child’s password is forgotten or unavailable, a doctor or paramedic can enter his or her license number, along with the child’s name and date of birth, and “break the glass” to access the information through the system’s back door.
Elletson used the “break the glass” feature when she first enrolled Emily in MEMSCIS last year. Just before midnight on New Year’s Eve, Emily stopped breathing. Using wireless connectivity in the ambulance, Elletson and the paramedics were able to access Emily’s EIF before arriving at the hospital. That’s when Elletson put a printed version of the EIF in the diaper bag. She’s kept an updated copy there ever since.
The impact of MEMSCIS on parents with kids who have special health care needs is life changing. It means people like the Elletsons can feel comfortable leaving their daughter with extended family like grandparents, aunts, and uncles. Because the information is always readily available, they can leave town with their children and not worry about being away from Emily’s regular doctors.
“We’ve used the EIF in an emergency room in North Dakota,” says Elletson. “The doctor’s didn’t know much about Emily’s condition, but we had her EIF.” The form explained more than the family could, and the doctors were able to start treatment quickly.
MEMSCIS is a free service, funded by a federal grant from the U.S. Department of Health and Human Services, Bureau of Maternal and Child Health. There are currently 170 children enrolled in the program, and efforts are being made to include additional health care specialties. There are also plans to expand MEMSCIS beyond the Twin Cities area.
