Working to enhance the care in the Children's Memorial Hermann Hospital NICU from the left are Amir Khan, M.D., Fauna Osborne and her daughters and former NICU babies Trinity and Kylee, and Nicole Francis, M.S., R.N., NE-BC.
Working to enhance the care in the Children’s Memorial Hermann Hospital NICU from the left are Amir Khan, M.D., Fauna Osborne and her daughters and former NICU babies Trinity and Kylee, and Nicole Francis, M.S., R.N., NE-BC.

Grateful for the extraordinary care their premature babies received while under the care of neonatal physicians, a group of mothers and fathers express their appreciation in an innovative way.

Periodically, they gather in a building in the heart of the Texas Medical Center to discuss ways to enhance the holistic care they received in the neonatal intensive care unit (NICU) of Children’s Memorial Hermann Hospital.

They are part of a parent advisory council that is partnering with quality improvement professionals at the hospital and McGovern Medical School to improve the delivery of care.

Because their children spent weeks if not months under the watchful eyes of the NICU team led by McGovern Medical School faculty, the parents have a unique perspective into how the care team works together, how tests are ordered and what procedures are followed.

“Most of the quality structures are designed for adult patients,” said Amir M. Khan, M.D., the David. R. Park Professor in Pediatric Medicine, chief of neonatal-perinatal medicine, and the medical director of Children’s Memorial Hermann Hospital’s 118-bed Level IV NICU.

However, a NICU is not your typical hospital unit. For starters, the patients are there longer than average, which means that doctors and nurses have to maintain a high level of care over an extended period of time.

“You can’t drop the ball,” Khan said. “You have to be vigilant all the time. That is why processes such as Robust Process Improvement® that allow for sustained improvement in care are so important.”

Khan and his colleagues are in the midst of a four-year, approximately $4 million quality improvement initiative funded by the U.S. Department of Health & Human Services’ Agency for Healthcare Research and Quality, which is looking at everything from the unit’s electronic health record systems to its patient safety measurements.

In the process, researchers will identify indicators that something might be amiss. For example, if caregivers have to intubate a child, it could mean that the first breathing tube was not maintained properly. Of course, it could also be the first time the child’s condition warranted a breathing tube.

“These are what we call triggers,” Khan said. “Our goal is to identify 15.”

Rebekah Wilkinson, B.S.N., R.N.C., a NICU bedside nurse, is monitoring the unit for occurrences that warrant a trigger. “Our goal is that as we identify fixable issues we have a parent sitting at the table with us. Parents often see warning signs long before a trigger pops up,” she added.

Nicole Francis, M.S., R.N., NE-BC, clinical director of Neonatal Services at Children’s Memorial Hermann Hospital, said, “We all come to work because we want to take great care of babies and their families.  There is no better way for us to improve the care that we deliver than by asking our NICU moms and dads for their unique perspective.”

She said, “We are helping our NICU families navigate a difficult time and if there are changes that we can make to ease this time, then we need to make those changes. We are blessed to have families who received care in our unit who are back and willing to help us make the future better for future NICU babies and their families.”

There are more children in NICUs than you might think. Approximately 1 of every 10 children is born preterm, according to the Centers for Disease Control and Prevention, which is defined as birth before 37 weeks of pregnancy.

The parent advisory council is led by Khan’s patient Fauna Osborne, whose triplets were born prematurely on April 3, 2012 and spent months in the NICU at Children’s Memorial Hermann Hospital.

Trinity and Kylee are doing fine. Cayden, who weighed 1 pound, 3 ounces at birth, lived for 44 days.

“The NICU care team was part of our family,” said Osborne, who is a social worker and whose husband George works in the oil industry. “They were always there when we needed them.”

Osborne and the eight other NICU families on the council are working closely with Madelene Ottosen, Ph.D., R.N., who is a co-investigator on the grant at the UTHealth Memorial Hermann Center for Healthcare Quality & Safety and an assistant professor with the School of Nursing.

“The idea is for us to share our experiences in the hope of improving the already excellent care,” Osborne said. “We’ll provide input on the hospital’s quality improvement initiatives.”

Khan said, “The people who are there the most are the parents. They are the ones who watch and observe what’s going on for long periods of time.”

“This is one of the first patient advisory committees for Children’s Memorial Hermann Hospital,” Ottosen said.

Eric Thomas, M.D., M.P.H., the grant’s principal investigator and the director of the UTHealth Memorial Hermann Center for Healthcare Quality & Safety, said, “This is what we call a learning laboratory. We have parents and frontline caregivers working together to spot issues in the delivery of care and to resolve them.”

The idea is not to assign blame, according to Thomas, but rather to identify issues in the system.

“With these triggers, we’ll be able to detect events that can be prevented,” said Thomas, who is the associate dean for Healthcare Quality and Griff T. Ross Professor in Humanities and Technology in Health Care.

Once the triggers are identified, Thomas said training sessions will be scheduled with caregivers to share the findings and put detection systems in place.

In addition, the unit’s software systems will be reconfigured to alert caregivers when a triggering event occurs.

Right now, patient safety experts are focused on multiple areas. Ottosen is working on the parent involvement component; Thomas on the leadership component; Jason Etchegaray, Ph.D., on patient safety measures; and Dean Sittig, Ph.D., the Christopher Sarofim Family Professor in Biomedical Informatics and Bioengineering at UTHealth, on the electronic medical records component. The Joint Commission Center for Transforming Healthcare assisted with the research methodology that includes Robust Process Improvement® or RPI, which includes Lean Six Sigma and Change Management.

Because many preterm babies are born with breathing problems, special attention will be paid to respiratory issues. Nutrition is also an issue for preterm babies.

Thomas said the goal is to cut preventable harms in half. The project runs through September of 2018.

“Surveys and questionnaires are no match for the direct input we’re getting from these parents. They are sharing their personal experiences to help the people who will require these services in the future,” Khan said.

At a recent parent advisory council meeting, Osborne told the assembled parents, “You are here because you want to give back. We as parents can make a contribution.”