When we began our quality improvement work, we knew that improving care for chronic diseases would be critical: children with chronic disease make up the majority of our patients, and lessons learned in any chronic disease would likely be applicable across many conditions, increasing the impact of our work.

We chose to start with cystic fibrosis (CF), a disease for which comparative data from the Cystic Fibrosis Foundation showed our outcomes to be only slightly better than average.

As our work in CF began to show results and we expanded into other areas, we realized that in addition to the disease-specific work, we needed to build systems that would address common issues and support best practices in aspects of care that cut across our organization.

We talked to families of children and adolescents to understand their most-pressing needs and found that they wanted better coordination of their care, and more support in managing their disease at home.

Through our cross-cutting approach, we are now able to meet their needs by applying best evidence to the whole system and achieving a consistent, unified approach that ensures that wherever and whenever families interact with Cincinnati Children’s across their continuum of care, their needs are being met.










Self-Management Support

Leadership: Janalee Taylor, MSN, RN, CNP, Sandy Cortina, PhD 

> Provide evidence-based self-management support programs

> Collaborative communication and problem solving with patient and family

> Optimize the ability of the patient and family to manage at home

> Self-management support programs being implemented and sustained across 34 conditions with plans to spread across 100 conditions

Spread knowledge across range of diseases.

Information Systems Support

Leadership: Andy Spooner, MD, Maria Britto, MD, MPH 

> Electronic health record tools that provide personalized data to guide care

> Real-time patient data entry into electronic medical records

> Trialing new ways to communicate with patients and families (e.g., texts to remind teens to take their medications)

> Sharing disease-based data across hospitals

> Additional resources: MyChart online tool  

Spread knowledge across range of diseases.

Family-To-Family Support

Leadership: Dawn Nebrig, Julie Bick  

> Brings together families with similar life situations so they can share knowledge, concerns and experiences (brachial plexus support, the Heart Institute)  

> Support provided when families want it and in ways that families want: online, email, phone, in person

> Online Support Community: Special Connections is a safe place where families and caregivers of patients at Cincinnati Children's connect with others facing similar challenges for support and information sharing


Watch a video:
A Cincinnati Children's
employee leads the
development of a
mentoring program for
children and adolescents
with inflammatory
bowel disease.

Spread knowledge across range of diseases.

Customized Scheduling for Complex Needs

Leadership: Dave Krier

> Coordination of scheduling of multiple appointments to meet family needs

> Examples: hematology / oncology, special needs, gastroenterology

Spread knowledge across range of diseases.

Proactive Financial Counseling

Leadership: Chris Lah

> Provide assistance to families in obtaining financial resources

> Reduce number of families with bad debt

> Increase number of families obtaining needed financial resources

Spread knowledge across range of diseases.