1. NCC Care Coordination Workgroup
Megan Lyon, MPH
Project Coordinator, NCC
The NCC is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under Cooperative Agreement #U22MC24100, The National Coordinating Center for the Regional Genetic Service Collaboratives, $1,300,00(6/15-5/17)

2. Formation
In September 2015, the NCC Medical Home and NCC Transition Workgroups were merged to focus on topics related to care coordination.
Each RC named representatives to the group. Membership includes clinicians, genetic counselors, NCC, HRSA, and NCMHI representatives.

3. Care Coordination Report
Coordinating Care for Children with Genetic Disorders: Sharing Exemplary Practices from Primary and Specialty Care Providers report outlines excellent care coordination practices themes and strategies found through a qualitative interview process.

4. Methodology of Report
The NCC Medical Home Workgroup developed a “wanted” poster to receive nominations for clinics and/or programs that provide excellent care coordination.
30 practices from across the country were nominated.
24 individuals representing programs were interviewed in a semi-structure, qualitative one-hour telephone interviews.

5. “Excellent Practices” demographics
Programs included: general pediatric care, genetic conditions practices, specialty care, regional or community-based programs, center for fetal diagnosis and treatment.

6. Key Findings and Features
Key findings fell into one of three categories:
Exemplary Practices
eg. Create individualized and comprehensive care plans with input from multiple specialties to organize patient information and prioritize action steps.
Supporting Implementation
eg. Recruit and maintain staff who are passionate about what they do.
Strategies for Overcoming Barriers
eg. Measure your program’s return on investment.

7. NCC/RC National Evaluation Program: PM41: Medical Home Measure
During the national evaluation of the NCC/RC system, each RC is asked to report on HRSA Performance Measure #41.

8. NCC/RC National Evaluation Program: Transition from Pediatric to Adult Care
In 2015, NGECN re-contacted willing participants from the 2013 Access to Care Survey. Three transition questions were asked.

9. Current Care Coordination Project
The Regional Support Service Model Workgroup Recommendation Brief was sent to HRSA on March 31st.
As a supplement to brief, the NCC Care Coordination Workgroup will be meeting for two three-hour webinars to discuss how care coordination, medical home, and transition policies fit within the eight recommended models

10. NCC
12/5/2018
Thank you!
Contact us:
NCC Project Director, Michael S. Watson, PhD,
NCC Medical Director, David Flannery, MD,
NCC Project Manager, Alisha Keehn, MPA,
NCC LTFU Project Manager, Amy Brower, PhD,
NCC Evaluator, Debbie Maiese, MPA,
NCC Project Coordinator, Megan Lyon, MPH,
NGECN Project Director, James O’Leary, MBA,
NGECN Project Manager, Sharon Romelczyk, MPA,