Understanding the experience of living with a genetic condition is critical to optimizing health care delivery to individuals and families affected by such conditions. The Partnership for Genetic Services Pilot Program proposes to develop a model project, aimed at increasing the likelihood that persons affected by genetic conditions receive quality family-centered and culturally sensitive medical care. This will be accomplished by creating a series of trial educational interventions in the training of primary care providers in medical schools, as well as in internship and residency programs. In addition, the project proposes to reach practicing providers where they are increasingly concentrated, in managed care settings. The Partnership will focus on developing a comprehensive understanding of genetic services within selected managed care settings, as well as the design of educational and service interventions to enhance the quality of these services. The Partnership for Genetic Service Pilot Program will be accomplished by: 1) implementing a model for the program in conjunction with three regions of the Council of Regional Networks for Genetic Services (CORN) and evaluating the effectiveness of the model's design; 2) identify and define key components of a consumer perspective of quality genetic services; 3) integrating 30 genetics consumer educators into classes at approximately 15 medical schools, internship and residency programs, representing approximately 5,000 students; (4) bringing together 20 genetics consumer educators and clinical genetics providers with PCPs and managed care administrators at four managed care pilot organizations--representing approximately 14,000 primary care providers to enhance genetic services to the approximately 768,000 plan members who receive their care within these settings; and 5) developing, employing and evaluating multimedia educational materials for genetic consumer educators to use in support of case-based learning interventions with medical students and primary care providers.

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Education Projects (R25)
Project #
1R25HG001692-01
Application #
2453991
Study Section
Ethical, Legal, Social Implications Review Committee (GNOM)
Project Start
1998-03-25
Project End
2000-02-29
Budget Start
1998-03-25
Budget End
1999-02-28
Support Year
1
Fiscal Year
1998
Total Cost
Indirect Cost
Name
Alliance of Genetic Support Groups
Department
Type
DUNS #
City
Washington
State
DC
Country
United States
Zip Code
20008