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  Children’s National Medical Center Physicians Launch Personal Health Record for Congenital Heart Disease Patients
October 6, 2011

Electronic Portal, Follow My Heart, Helps Young Adult and Pediatric CHD Patients Manage Their Personal Medical Histories, Care Transitions


Heart Disease, Developed by Doctors at Children’s National

Washington, DC—To help adolescents and young adults with congenital heart disease (CHD) share their personal medical histories as they transition from pediatric to adult healthcare providers and take on more responsibility for their care, Children’s National Medical Center cardiologists Linda Bradley Tiernan, MD, and Karen Kuehl, MD, have teamed up with a personal health record company to develop Follow My Heart, the only electronic personal health record specific to CHD and developed by physicians.

Follow My Heart provides patients an efficient way to communicate their complicated health information to authorized healthcare providers, helping to coordinate ongoing care, prevent unnecessary and expensive tests, and improve the follow-up rate of adolescent and adult CHD patients who move from pediatric to adult specialized congenital heart disease centers.

The Follow My Heart personal health record stores a patient’s digitalized medical information in one place for Internet access anytime, anywhere, including important cardiac medical and surgical information, such as electrocardiograms, pacemaker data, and echocardiogram, heart catheterization, and operative reports, and emergency contact information. The information is owned by the patient, who can view his or her personal health record and control who has access to the data.

“It can be difficult for adolescents and young adults with CHD to manage their complex diseases, but we also want to empower them to take an active role in their health as they get older, which is where Follow My Heart comes in,” said Dr. Bradley Tiernan. “At Children’s National, we see firsthand that for patients, having a portable and accessible summary of one’s heart health information is enormously helpful.”

With its pilot phase completed, Follow My Heart is being made available to CHD patients nationally. Practice-based licenses are available to pediatric and adult congenital cardiologists, who can offer Follow My Heart to their patients. Adolescent and adult CHD patients not currently receiving care through an adult CHD center that offers Follow My Heart can enroll independently or as a benefit of membership in the Adult Congenital Heart Association.

Early users of Follow My Heart report positive experiences. “My son was admitted to the hospital with stomach pains. After listening to his heart and viewing his ECG, my son insisted that the attending physician access his Follow My Heart record. The medical team was very impressed with the site, and it saved us all a great deal of time and aggravation,” said Barry Meil, parent and Board Chairman of the Adult Congenital Heart Association.

CHD is the most common birth defect worldwide. More than 1.8 million people in the United States have CHD, and more than a third of patients over age 18 do not receive appropriate follow-up care for their condition. Adolescents and adults with CHD often have complex chronic medical conditions and fragmented care from multiple healthcare providers in different locations, especially as they leave home for higher education and careers. Fragmentation of care contributes to poor health outcomes. Any lapse in care dramatically increases the risk of complications.

Follow My Heart was designed by Drs. Bradley Tiernan and Kuehl of the Division of Cardiology at Children’s National, in conjunction with the Washington Adult Congenital Heart Program at Children’s National Medical Center and the Washington Hospital Center, in Washington, DC, and FollowMe, Inc., a personal health record company in Sonoma, Calif. Follow My Heart has been endorsed by the American College of Cardiology Foundation and the Adult Congenital Heart Association. Primary support was provided by the friends and family of Christine Durbin, the late daughter of Sen. and Mrs. Dick Durbin (Ill.). Additional funding was provided by the Board of Visitors at Children’s National Medical Center.

For a demo of Follow My Heart or for interviews, contact the Children’s National Public Relations Department:

Emily Dammeyer or Emily Hartman,  202-476-4500

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About Children’s National Medical Center:
Children’s National Medical Center in Washington, DC, has been serving the nation’s children since 1870. Home to Children’s Research Institute and the Sheikh Zayed Institute for Pediatric Surgical Innovation, Children’s National is consistently ranked among the top pediatric hospitals by U.S. News & World Report and the Leapfrog Group. With 283 beds, more than 1,330 nurses, 550 physicians, and seven regional outpatient centers, Children’s National is the only exclusive provider of acute pediatric services in the Washington metropolitan area. Children’s National has been recognized by the American Nurses Credentialing Center as a Magnet® designated hospital, the highest level of recognition for nursing excellence that a medical center can achieve. For more information, visit ChildrensNational.org, receive the latest news from the Children's National press room, or follow us Facebook and Twitter.