Empowering Clinicians and Advancing Treatment Protocols

To improve data collection about spina bifida patients, Michael Daugherty, MD, a Cincinnati Children’s pediatric urologist, created a patient-entered questionnaire that electronic medical record (EMR) maker EPIC is incorporating into its foundation system. The tool will help optimize care and research for spina bifida patients now and in the future.

As part of the National Spina Bifida Registry, the Spina Bifida Center at Cincinnati Children’s collects and tracks data for patients, specifically around bladder and bowel management. A few years ago, the urology team’s documentation of these data points were low—between 38% and 40%.

The center’s research coordinator asked Daugherty for support in capturing data points needed for the national registry. At the time, there was no coordinated, searchable way to gather the information.

Daugherty, who is certified by EPIC as a physician builder and holds a master’s in health informatics, built a solution that now yields survey response rates of 95%.

“We revamped our documentation and notes to create an automated process that follows the national registry data points,” Daugherty says. “It’s now a standard part of our workflow in the clinic.”

A User-Friendly Way to Gather Data

Daugherty developed a questionnaire within EPIC that is sent to all patients. Patients and families can answer the questions at home or in the clinic when they meet with their doctor, or with residents and fellows. The survey collects data on the frequency of urine and bowel leaks, the impact on patients, and the medications they use.

As patient responses are collected and integrated into the Cincinnati Children’s EPIC system, the data are “tracked and followed, and we can study changes and export specific data points for research,” Daugherty says.

EMR systems capture key data points that physicians and researchers can use to track care outcomes and research ways to design better systems. EMRs are programmed to sort and analyze the data health providers feed into them. When Daugherty or any other physician wants their EMR to start collecting new data, they must write a program to tell the system how to do it. Rather than wait years for EPIC to build what he wanted, Daugherty did it himself.

“It seems logical and very simple, but it’s not,” Daugherty says. “It took a lot of effort to build and implement this.”

To make it all work, Daugherty created questions that mirror the national registry, developed a workflow and converted it to an electronic form on the EPIC system.

He used a simplified format so that rotating residents and fellows can also easily access and use the survey when they are meeting with patients. This user-friendly version includes instructions on how to complete the form and has improved the data collection success rate among residents and fellows.

Building a Foundation for Future Insights

The National Spina Bifida Registry strives to capture longitudinal data over the course of a patient’s life—from childhood through adulthood. Knowledge about incontinence, neurological issues and surgeries needed within the spina bifida population creates opportunities for a better understanding of how the condition impacts patients at different stages of life.

For now, the spina bifida EPIC smart data questionnaire:

• Improves survey response rates
• Proves the ability to query an existing database to match key data points
• Saves time on data collection
• Shows that patients can reliably complete the questionnaire from EPIC

“We’re trying to figure out how we can use this more to our advantage,” Daugherty says. “In the future, the data could assist physician scientists in designing new treatments or care protocols.”

(Published November 2025)

Read More from Urology