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11:09 AM

Engaging parents to improve inflammatory bowel disease outcomes

Dr. Julie Bass says parental involvement has been a key for IBD improvements

Dr. Julie Bass

With one of the larger inflammatory bowel disease (IBD) programs in the nation, the Children’s Mercy Division of Pediatric Gastroenterology cares for 550 to 600 patients and their families on an ongoing basis. Like many programs, the multidisciplinary IBD team includes gastroenterologists, nurse practitioners, a psychologist, social worker, nutritionist and researchers.

But it’s parent engagement that sets the Children’s Mercy team apart from other programs locally, regionally and nationally.

National collaborative encourages parent involvement

According to Julie Bass, DO, Medical Director of the Inflammatory Bowel Disease Program, the Children’s Mercy IBD program became involved in the ImproveCareNow Collaborative in 2011.

ImproveCareNow is an international quality improvement collaborative dedicated to improving lives of pediatric and adolescent patients with IBD. This collaborative has demonstrated remarkable success, increasing remission rates nationally from about 55 percent to nearly 80 percent, without prescribing any new medications.

“When joining the collaborative, we were encouraged to invite a parent to become an engaged participant on our IBD Quality Improvement team,” Dr. Bass said. “Though this idea sounds simple, it is not the dominant culture in health care.”

Partnering with parents leads to quality improvements

Immediately, Dr. Bass thought of Jamie Hicks, a parent whose son was inpatient at Children’s Mercy at the time. “Jamie easily stood out to me with her sense of passion, professionalism and purpose,” Dr. Bass said. “She knows she represents not only the voices of our IBD patients and their families, but also the thousands of IBD patients and parents living with this disease.”

“I am an expert in my child,” Jamie said, “but not in quality improvement or medical research.” At the first conference she attended, Jamie listened carefully to the conversations around her. “The Children’s Mercy Quality Improvement team kept asking me for my viewpoint and listened,” she said. “That inspired me to action.”

When Dr. Bass and Jamie returned to Kansas City, Jamie began to serve as member of the Quality Improvement team. “I was able to offer the parent’s perspective and bring ideas for improvement to the table,” she said. Together, they addressed issues such as phone line access, resulting in a dedicated IBD phone line, a list serve to share news about upcoming events, and discussions about continual quality improvement.

Expanding the parent and Family Advisory Council’s role

Though this initiative started with just one parent, in late 2014 it expanded to a full parent advisory council which partners with the Quality Improvement team and is called the Parent and Family Advisory Council (PFAC). The PFAC meets quarterly with Jamie serving as the liaison to the IBD team, sharing parents’ concerns and suggestions.

“One of the things the PFAC brought to our attention was the need for a clinic discharge form for each IBD patient,” Dr. Bass explained. After working together, the team developed a form that Dr. Bass said has changed the way she practices medicine.

“I am very conscientious and detail-oriented. I thought I provided the same level of care for every patient, but using this form has made it clear to me that there is more I can do. It’s well organized, straightforward, and a great tool to be certain every patient receives the same standard of care,” Dr. Bass said.

Other projects the PFAC has worked on include patient education materials, and a video created for newly diagnosed patients and families.

Advisory Council identifies opportunities for innovation

The PFAC’s next innovation is to create a Children’s Mercy app for chronic disease management that will be designed to help all children, not just those with IBD, become more engaged in their own care.

The Children’s Mercy program has been recognized as a leader in parent engagement through ImproveCareNow and other national organizations, including the Institute for Healthcare Improvement.

“This partnership has been extraordinary for our IBD team,” Dr. Bass said. “What really drives the work is what the parents are passionate about. The unique perspective of the PFAC allows our team to identify issues we were not even aware existed.”

As a parent representative to ImproveCareNow, Jamie has had the opportunity to compare notes with parents from across the nation about their engagement with other IBD programs. “The IBD Quality Improvement team embraces our perspective, actively involving our parents in decisions to improve patient care,” she said. “Children’s Mercy really is revolutionary.”