• Article
  • December 11, 2018

3 Ways Hospitals are Transforming the Delivery System for Children with Complex Medical Conditions

As someone who has spent a career helping others impact large-scale changes in health care, Jane Taylor knew the magnitude of the challenge for the hospitals participating in the CARE Award. It was going to take a new, innovative approach to care to truly transform care delivery systems for children with complex medical conditions.

Medical students participate in rounds to learn how to better care for children with complex medical conditions.

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The CARE Award's participating institutions are presenting informational webinars to share some of their work from the project. Leaders from Children's Hospital of Philadelphia, Cincinnati Children's Hospital Medical Center and Cook Children's Health Care System in Fort Worth, Texas; gathered recently to discuss findings related to improving care delivery systems for CMC through better care coordination.

This article is the third installment in a new series on the CARE Award, "Coordinating All Resources Effectively." The CARE Award is a landmark national study aimed at improving quality outcomes and reducing the cost of care for children with medical complexity (CMC) enrolled in Medicaid. Funded by the Center for Medicare & Medicaid Innovation, CARE is designed to test the concept of a new care delivery system supported by new payment models specific to CMC. Under the CARE Award, the Children's Hospital Association partnered with 10 of the nation's leading children's hospitals, 8 state Medicaid programs and Medicaid managed care organizations (MCOs,) more than 40 primary care practice sites and more than 8,000 children and their families.

"We use the term 'transformation' pretty liberally right now around improvement in our culture," says Taylor, MBA, M.H.A., Ed.D., quality improvement advisor and learning designer and a CARE Award faculty member. "Each clinic that was engaged in this work had access to a practicing transformation facilitator. That's how seriously we took this idea of transformation."

To help the CARE Award institutions achieve that transformation, Taylor and her team assessed each one to ensure they possessed "deep improvement capability." She also provided coaching and training in improvement science for the CARE Award facilitators at each hospital.

Leveraging technology for transformation

With 60 percent of the highest-utilizing patients seeing primary care physicians outside the Children's Hospital of Philadelphia (CHOP) care network, a major component of its transformation involved leveraging technology to impact the entire patient population.

CHOP's Compass Care model integrates an interdisciplinary team for complex care medicine and care coordination, providing intensive patient engagement across the care continuum. Additionally, the program seeks to proactively identify children in need of services.

Throughout the CARE Award period, CHOP implemented new initiatives in line with these goals, including:

  • Leveraging tools in its EHR to build registries and reports to better facilitate care coordination and proactive outreach to patients and families throughout the patient population.
  • Establishing a regional care coordinator role. In this position, an RN would coordinate all facets of a patient's care from hospital admission through post-discharge appointments.
  • Emphasizing 24/7 patient and family access via the MyCHOP patient portal.

In presenting these initiatives, Noelle Stack says the patient portal was particularly helpful in keeping everyone on the same page. "This tool has really allowed patients and families to stay engaged with their care team," says Stack, M.S.N., RN, CPN, nurse manager, care management at CHOP. "It also allows for streamlined communication between the patient family and their care providers."

Stack adds that while the role of technology in CHOP's transformation of care delivery for children with complex medical conditions is crucial, the value of having engaged teams ready to embrace the changes is just as important.

The importance of standardization

As part of the overall redesign of its general pediatric primary care clinic in 2012, Cincinnati Children's Hospital Medical Center developed a care management model. That model has evolved over the years, but according to Lisa Crosby, the CARE Award shed new light on the process.

"We learned we had a model for coordination of care, but we really needed to standardize our practice," says Crosby, CNP, APRN, DNP, PMHS, clinical manager/asthma care coordination program lead and program coordinator for school-based health centers at Cincinnati Children's. "We focused many of our efforts on the clarification of practice and standardization across our primary care sites."

Standardization crystallized across five primary change concepts:

  • Implementation of a patient registry at each site
  • A dynamic care team assigned to each patient and family
  • An access plan for each family with contact information specific to all potential health care issues
  • A care plan for each patient based on shared goals of the family and care team
  • Transitions of care including changes in care management location

Among the successes of the care management program, Cincinnati Children's counts the implementation of patient-stated goals and access plans, as well as integration of the care managers with the clinical care team. But ultimately, success is measured in how the program impacts patients and their families.

"Our most proud moments really focused on our relationships with our families throughout this process," Crosby says. "There was significant awareness of patient and family needs; obviously when you're working with children, it's not just the child."

Bridging the silos

Prior to its participation in the CARE Award, Cook Children's Health Care System had three distinct major entities—each with its own care management system:

Presenting CARE Award findings on behalf of Cook Children's, David Bergman says the transformation for Cook Children's was focused on moving toward an integrated case management model.

"They wanted families to feel there was a service coordinator who they knew to help them navigate the system and provide the individualized support they needed," says Bergman, M.D., medical director of the Lucile Packard Children's Hospital's Complex Primary Care Clinic and the CARE Award medical director. "There was an emphasis on getting beyond the silos and creating overarching systems that brought the various entities together."

Bergman says another characteristic of Cook Children's that set it apart from its CARE Award counterparts was the absence of a brick and mortar complex care clinic—instead, it worked with a network of seven neighborhood clinics (NHCs).

The NHCs have nearly 100 percent of their patients on Medicaid, and prior to the CARE Award, all care coordination needs were handled by primary care physicians and clinic staff. Under the new model, care managers complete health care needs assessments for their patients, determine patient and family needs and create access plans.

Additionally, service coordinators connect NHC physicians and nurses to patient families to follow up on referrals and coordinate any needs the families may have related to their child's care—community resources, medical supplies and sick visits. Cook Children's also expanded after-hours care at some of the NHCs to decrease ED dependency.

According to Bergman, it all ties back to spanning the communication and access "silos" that once existed. "I think the bottom-line lesson for Cook Children's was taking a look at the silos and seeing what it would take to bridge them," Bergman says. "From there, it was about creating a suite of care coordination and care management services that was overarching for these entities and would be able to provide kids the care they need."

This publication was made possible by Award Number 1C1CMS331335 from the Department of Health and Human Services, Centers for Medicare & Medicaid Services. The contents of this publication are solely the responsibility of the authors and do not necessarily represent the official views of the U.S. Department of Health and Human Services or any of its agencies. The research presented here was conducted by the awardee. Findings might or might not be consistent with or confirmed by the findings of the independent evaluation contractor.