Table 4.

Eight regional models

Model 1:Regional genetic service resource network. A regional infrastructure with a central coordinating body. Regions would work with states, providers, and consumers to develop a team of stakeholders and implement projects that improve access to genetic service. Goals and priorities for these projects would be congruent with guidance provided by the Genetic Services Branch (GSB) and Health Resources and Services Administration (HRSA). Specific project deliverables would be consistent with regional needs. This model could utilize elements of the below models as project deliverables.

Model 2:Regional clinical support centers. Using a regional infrastructure, the focus would be on clinical providers, public health genetics, or both with activities limited to supporting clinical services through technical assistance (e.g., telemedicine), clinical support (education), care coordination, evaluation, and workforce capacity.

Model 3:Regional genetics education and technical assistance centers. A regional infrastructure would focus on both clinical and public health providers. Primary focus is on development of materials and/or education similar to the ECHO model, and public health and non-genetics provider education timed to the right time and place.

Model 4:Regional patient engagement centers. Regionalized centers would pursue activities focused on consumers. Primary partners may be Genetic Alliance, public health departments, or both. Activities would be limited to administration, patient engagement including care coordination, and education.

Model 5:Public health model. This model could be administered by a central coordinating body, only regional centers, or both. This would address public health concerns (e.g., policy development), and funding would support a state genetics coordinator in each state. The coordinator would work with individuals in genetic and chronic disease offices through Title V. The main role would be to build a tight integration with the public health workforce that would demonstrate and eventually address need.

Model 6:Quality improvement model. A regional infrastructure with a centralized coordinating body would engage in activities focused on a plan to develop, implement, and evaluate formal quality improvement processes to improve access. This could be a single project across the country. A modification could be a national quality improvement (QI) focused project, with a proportion of funds at the Regional Collaborative Group (RC) level supporting RC-specific projects.

Model 7:Regional clinical support network. Regions provide clinical services via local or state clinics receiving funds from regional centers to meet specific and unique needs as identified by the local/state centers. A national coordinating body would coordinate the regions, and specific goals and objectives would be established for each local/state clinic at the start of each funding period.

Model 8:Genetic service data centers. This model could utilize a regional infrastructure, where the central coordinating body would work with HRSA to determine the data of interest and possible national data sources. Regional centers would work with clinical entities, consumers, and states to collect data related to access to genetic services, focusing on where patients are, their demographic and clinical characteristics, when and where they receive services, and gaps in service.

Recommended hybrid model:

Genetic services support model: This model would have a primary focus on promotion of efficient practice within genetic centers (technical assistance [TA] for telegenetics, TA for authorization of genetic testing and other genetic services, TA for genetic counselor licensure and billing; other activities as identified through interaction with genetics providers), and aggressive and targeted support of nongenetics providers through promotion of other tools to enhance the level of care that can be delivered in conjunction with, but outside of, the genetics center itself.