Care Coordination Workgroup


Driver Diagram for Care Coordination Measures


Authors
A project of the Care Coordination Workgroup of the National Coordinating Center (NCC) for the seven Regional Genetic Service Collaboratives

Description
The NCC Care Coordination Workgroup developed a Driver Diagram to provide a framework for using feasible and repeatable measures to guide efforts to improve care coordination for individuals with heritable disorders and their families. The NCC appreciates any and all feedback on the Driver Diagram that will enable it to better address the issues, questions, and challenges that may face programs or practices that use it.  Please email ncc@nccrcg.org with any feedback or questions.

Driver Diagram



Click here to download the diagram.




Coordinating Care for Children with Genetic Disorders: Sharing Exemplary Practices from Primary and Specialty Care Providers


Authors
A project of the Medical Home Workgroup of the National Coordinating Center (NCC) for the seven Regional Genetic Service Collaboratives


Abstract
Twenty-four programs were nominated for providing exemplary care in coordinating services for children with heritable disorders. Individuals representing the programs participated in qualitative telephone interviews. The nominees represented a variety of primary care and specialty practices and community-centered programs. Key themes and strategies emerged from the interviews, several of which crossed settings – details are offered herein. Providing coordinated care is rewarding for the clinic staff and deemed valuable by patients and families, but it is time-consuming and not adequately reimbursed by third-party payers. Developing and maintaining committed staff and financial support are ongoing challenges for the programs interviewed.


Full Paper



"An Approach to Family-Centered Coordinated Co-Management for Individuals with Conditions Identified Through Newborn Screening"


Authors
W. Carl Cooley1, Alex R. Kemper2, and the Medical Home Workgroup of the National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives


Abstract
Improved survival of children with serious heritable conditions through better detection and treatment has created a challenge within the healthcare system.  There is a limited workforce of specialists to provide condition-specific care and primary care providers often have limited knowledge about the specific conditions.  Furthermore, systems to coordinate care are often unavailable.  To address the need to improve condition-specific care and other preventive and acute care management, the National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives convened an expert workgroup to develop strategies for a family-centered, community-based system of care.  These recommendations recognized the importance of involving families, the primary care medical home, and specialty care teams as equal partners.  Key elements include: explicit care coordination; identification of the location of management, which can change over time; and planned co-management.  Recommendations for achieving these goals include developing a clearinghouse of tools, improving electronic health record systems, prospective research to evaluate the effectiveness of interventions to improve co-management, and aligning incentives for healthcare providers and families to work together.   


Full Article