Dr. Freeman Miller is a pediatric orthopedic surgeon at Wilmington, Delaware-based Nemours Alfred I. duPont Hospital for Children, where he serves as the co-director of the cerebral palsy research program. About six years ago, he realized he lacked a complete understanding of what his patients need — particularly at a population level.
The data gathering tools the hospital had at the time were time-consuming and hard to put into a comprehensive format.
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The solution? Creating a patient registry that could assess the population characteristics in a timely and efficient way.
“It was easy to say, but it was hard to do,” Kenneth Rogers, the hospital’s program manager for orthopedic research, said during a session at the HIMSS Pop Health Forum in Chicago. Rogers assisted Dr. Freeman in developing the registry.
A grant from the Swank Foundation enabled them to move forward with the registry, which was created by an external vendor. It was then integrated with Nemours’ Epic EHR system.
Through the project, the hospital could capture information in a granular format and store it in a database outside its Epic EHR. Its capabilities not only enabled better data gathering, but also allowed for better patient and parent interaction with clinical care.
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Despite its benefits, making the patient registry an actuality came with its fair share of challenges.
One key issue surrounded bringing in tablets to assist with collecting information. They had to be compatible with the EHR system, but also able to prevent patients from accessing records in Epic. The tablets had to be securely stored somewhere, and Nemours needed to ensure that patients weren’t going to leave the hospital with a tablet in hand.
Nemours also encountered WiFi problems. Internet access was a necessity in all patient and clinician areas, but for a while, that wasn’t happening. The wireless would work in one room, but two feet outside the door, the connection would die, Rogers said.
In addition to solving these obstacles, the hospital amassed feedback from staff members and patients’ parents. For example, staff recommended having a consistent area to keep tablets at the front desk. By consulting parents, Nemours found it may be useful to have a larger font size on the tablets. Additionally, the hospital discovered how to best format questions for parents to answer.
All these difficulties and processes have been steps along the journey to making the cerebral palsy patient registry a success.
“We learned a lot,” Rogers said. “It’s the little things that make or break your program.”
Photo: stuartmiles99, Getty Images
