Medical Home Work Group

1. Medical Home Work Group Greg Prazar, MD Work Group Chair

2. How Our Work Evolved The Medical Home Work Group was re-activated in October of 2014 after having been an ad hoc strategic planning committee since June of 2013. The charge: to improve care and outcomes for children diagnosed with genetic conditions by identifying and testing improvements in the way specialty care, primary care and families work together.

3. One representative from each New England State Four parent representatives Monthly phone calls Collaboration with improvement partnerships in Vermont, NH, and Maine, which have evidenced-based practice research Goal of replicating and expanding on the accomplishments of the Genetics in Primary Care Institute

4. Webinar Series The importance of the medical home and care coordination for all children; Working with families, primary care providers and specialists to achieve a shared plan of care for children with genetic and heritable disorders Obtaining and documenting a complete family and social history in the pediatric and young adult medical record Incorporating updated genetic information into pediatric care for children in primary care offices The use of family centered communication to balance family strengths and challenges The role of Family Voices and Family to Family Organizations in helping families and professionals maneuver the maze of complex genetic and heritable conditions.

5. Healthcare Providers and GEMSS We supported the expansion of the GEMSS model to provide tangible resource to help primary care providers. • Served as consultants to the Education and Outreach work group: • Routine Surveillance • Emergency Protocols • Specialists who may be involved • Insert for letter of medical necessity • We will also help with dissemination. • www.gemssforschools.org

6. Final Thoughts  Optimal outcomes for families and children with genetic and inheritable conditions will be predicated on at least 3 factors: The consistent completion of a comprehensive family and social history in the perinatal period Innovative tools for primary care providers to access the most current information about potential and diagnosed genetic and inheritable conditions Family and community support for quality of life, behavioral, and mental health needs throughout the lifespan of a person with a genetic and heritable condition.

7. Thank you!