Maximizing sharing of resources among states to improve genetics and newborn screening services

Background: The Health Resources and Services Administration Genetic Services Branch established seven regional genetics collaboratives to improve genetic and newborn screening services by encouraging the sharing of resources within and among the regions. The Western States Genetic Services Collaborative (WSGSC) is one of the seven regions and includes Alaska, California, Guam, Hawaii, Idaho, Oregon, and Washington. The mains goals of the WSGSC are to 1) develop a Practice Model to deliver genetic services through telemedicine and in-person outreach clinics to families not living near genetics specialists, and 2) help the public health agencies to develop genetics policies and improve their programs.

Methods: The oversight of project activities is monitored by an Advisory Committee consisting of representatives from each of the states/territory. Family/consumer participation is especially important and well represented in the WSGSC. The project activities are completed by work groups and project staff. To evaluate the efficacy of the different delivery methods in the Practice Model, the WSGSC uses a satisfaction surveys completed by families, genetic specialists, and referring providers. Key informant interviews, surveys, and focus groups are used to assess the needs of the region and direct public health activities.

Results and Conclusions: The WSGSC activities include: increasing access to genetic services using telemedicine, developing educational resources for families of children with or at risk for genetic conditions, and strengthening newborn screening follow-up programs. We will discuss the benefits and challenges of sharing resources across state borders and present our recommendations for other states considering multi-state collaborations.