Children’s Medical Center Dallas is among the first hospitals in the U.S. to implement true, untethered export of patient health data to a Personal Health Record (PHR) – one of the many benefits of health IT.  Over a year in planning, and in partnership with Microsoft Health Vault and Verizon, and supported by ONC, Children’s is now exporting patient health data for patients undergoing treatment for Sickle Cell Disease to their PHRs, and they are expanding the program to other care specialties including cardiac care.

We’ve posted a video that lets you experience how this program is helping one mother whose daughter suffers from Sickle Cell Disease.  This patient lives outside the Dallas area in Tyler, Texas and uses her PHR to expedite and enhance the precision of care her daughter receives in clinical encounters, especially emergency room visits that can be stressful and emotional.

Children’s Chief Information Officer, Pamela Arora, and Information Management and Exchange Director, Katherine Lusk, have spearheaded the effort that allows caregivers for these chronically ill children to access their medical records on demand using HealthVault and iPhones donated by Verizon.  Recognized as the next frontier in health transformation, this effort to empower patients to own and control their personal health data allows for more rapid access to data from multiple providers and institutions in one place, typically available on mobile devices with Internet connectivity.

Understanding patient and caregiver engagement has been critical to the success of this incredible work.  With the guidance of a designated Children’s PHR expert, patients and caregivers are taught how to use HealthVault and access – and use – their data.  Monitoring of use and patient satisfaction are helping to refine and improve the process.

The Children’s experience is revolutionary for these kids and while there were challenges, they were not insurmountable.  We think you will agree that this mother’s account makes the effort worthwhile, improving her daughter’s care and her peace of mind.

We have to give a special shout out to Pamela and Katherine for never giving up…they are truly making a difference.