Untethered: How Children's Medical Center Dallas Is Improving Care By Sharing Data, Innovations

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Children's Medical Center Dallas is one of the first hospitals in the country to export patient data to a personal health record that can be viewed anywhere, allowing some of the hospital's most vulnerable patients to access their information when they are treated at another facility.

Through a partnership with Verizon, the hospital has distributed free iPhones to rural families of sickle cell disease patients that contain the patient's complete PHR. Families then have their child's medical records on hand in the event an emergency requires them to visit another hospital.

"With these initiatives, you're trying to find where the biggest impact will be," says Pamela Arora, CIO of Children's Dallas. "And for those sickle cell patients up in Tyler, Texas, it's really hard to get to Dallas. And because the local physicians don't understand the condition the same way we do because we have all these specialists, it's allowed us to extend our reach into the community and really give those extras into the neighborhoods where it's needed."

Having immediate access to the complete record also has the added bonus of increasing patient engagement and improving medication adherence among the participating patients, says Ms. Arora.

These patients' information is exported from the hospital's electronic medical record system directly into the PHR, after the patient or family gives consent. "They basically have to say, 'Yes, I want this information in this PHR,'" says Ms. Arora, before it is moved onto the iPhone. The information is then "untethered" from the hospital's EHR, she says.

"Once we've pushed it out to the PHR, it really isn't hooked up to our EMR at that point," Ms. Arora says. "It's their record, and they can do what they want with it, manage it how they see fit."

The ONC recently highlighted Children's Dallas' efforts by as an example of a provider using available data and technology to improve the patient experience. "This pilot at Children's Dallas fundamentally changes the role of the patient," said Lee Stevens, policy director of the state health information exchange program at the ONC. "We believe this gives them the opportunity to own their data, to control it, to learn more about how they're doing and coordinate their care across all these providers. I think everyone understands the value of this, and they're excited about the path ahead."

For Children's Dallas, the path ahead will most likely include expanding the program beyond sickle cell patients. "We are looking in other areas like cardiology, and we're currently working with physicians to see how the solution can apply there," Ms. Arora says.

The PHR program is part of Children's Dallas' effort to raise the level of patient care in the area by allowing patients and neighboring providers to benefit from the hospital's health IT expertise. The hospital also takes advantage of the Stark Law exemption and Anti-Kickback safe harbor to get regional physicians on the hospital's Epic EMR, conducts a telemedicine program in schools works to keep Dallas-area children healthier and runs a telemedicine system that connects local hospitals with specialists from Children's Dallas' neonatal intensive care unit to avoid unnecessary transfers for specialized care.

"The more we reach out into the community, and the higher our bar is, it's actually raising the water level across the community," says Ms. Arora. "Children's has been a pleasure to work with… because they're willing to take those early steps so that others can get the benefit of [new innovations], too."

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