2008 Medical Home Study Summaries Summaries of two studies carried out by the Medical Home Workgroup under the direction of… February 16th, 2009
Newborn screening programs rely on children’s medical homes to provide confirmatory testing after a positive newborn screen and to help coordinate care in the event that a condition is confirmed. Through such activities, medical homes lead to more appropriate health care utilization and important decreases in health care disparities. Unfortunately, many pediatric and family practices do not provide the comprehensive family-centered services that are the hallmarks of a medical home.
Newborn screening programs often struggle to track individuals and coordinate care. Coordination of care can be especially difficult because of the varying availability of specialists (e.g., geneticists and other pediatric subspecialists, genetic counselors, and nutritionists) and generalists who are able to participate in often complex care. Newborn screening programs have developed varying strategies to address these challenges.
The overarching goal of this project is to improve the process of newborn screening by developing innovative approaches to strengthen the linkages between newborn screening programs, families, and child health care providers and to increase the number of child health care providers that can provide a medical home. As with the overall proposal for Southeast Genetics, this project will focus on those conditions identified by tandem mass spectrometry (TMS); however, findings will be generalizable to all conditions identifiable through newborn screening.
This project can lead to important improvements in the care that children with conditions identified by ms/ms newborn screening receive. Furthermore, by focusing on developing strategies to increase the number of medical homes, this project may also improve the quality of care that all children receive. Findings from this project will be shared with the other Regional Collaboratives, and we will work with other newborn screening programs to implement similar systems.
Membership
Alex Kemper, MD (Chair)
Goals and Objectives
Southeast Genetics will serve as the regional coordinator to improve the process of newborn screening by developing innovative approaches to strengthen the linkages between newborn screening programs, families, and child health-care providers; and to increase the number of child health-care providers that can provide a medical home in order to improve access to, coordinate, and ensuring continuity of health care.
Objective 1: To describe and measure the efficiency and effectiveness of the strategies used by newborn screening programs within Southeast Genetics to contact families and their children’s health-care providers after a positive ms/ms newborn screen to facilitate diagnosis and, when necessary, initial management (i.e., short-term follow-up);
Objective 2: To develop, standardize, and assess strategies for short-term follow-up after a positive ms/ms screen based on findings from Objective 1;
Objective 3: To characterize the health-care practices (e.g., general vs. subspecialty, size, urban vs. rural location, and the degree to which the practices serve as comprehensive medical homes) that provide services for children who have been diagnosed with a condition as a result of ms/ms newborn screening (i.e. long-term follow-up) and barriers to and facilitators of providing comprehensive medical home services; and,
Objective 4: to develop, implement, and assess programs to address the barriers and facilitators identified in Objective 3.
