Table 1.
Identified priorities based on national needs assessments and potential strategies to address them (not ranked; listed alphabetically)1
| Data collection |
| • Facilitate the acquisition of new knowledge |
| • Utilize appropriate existing data sources |
| Education and training on genetics for non-genetic providers |
| • Provide access to appropriate genetic resources |
| • Facilitate ongoing relationships between nongenetics and genetics providers |
| • Provide genetic consults for non-genetic providers (more like ECHO and less like a direct service) |
| • Increase public education |
| • Target education at points of care, e.g., federally qualified health centers (FQHCs) and other large providers that don’t focus on genetics |
| Efficient practice |
| • Enhance effectiveness of workforce through telegenetics and other service delivery models |
| • Promote and facilitate entry into the field (workforce) |
| Formal relationships with state public health, healthcare institutions, and university centers |
| • Develop contract and/or partnerships agreements for specific services, e.g., provide telemedicine support in your institution, report specified data, provide referrals to specialists |
| • Formalize relationships between institutions, health departments |
| • Facilitate partnerships to bring resources to the table |
| • Provide technical assistance to states with no genetics beyond newborn screening (NBS) to internalize the importance of genetics in public health at a state level, e.g., cancer |
| • Work actively with Medicaid |
| • Demonstrate a minimum set of core partnerships (e.g., Medicaid, Department of Health, university centers, Title V) |
| Practice support |
| • Support authorization and reimbursement (including billing and insurance) |
| • Support contractual services |
| • Support medical home model |
| • Connect with or provide access to national level expertise |
| Promotion of family engagement |
| • Facilitate finding and providing ongoing care to underserved families and groups (broadly defined; underserved may include initial services) |
| • Detect health disparities |
| • Consider health equity |
| • Identify relevant resources and supports including where to find providers with knowledge of the condition |
| • Enhance availability of social and emotional support |
| • Improve care coordination |
| • Provide information to consumers on tests and treatments for their conditions |
| • Assure information is delivered at the right time, as part of a standard of care and is provided where people are receiving care |