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 Genetics and Newborn Screening
  Region 7 Collaborative    
     

Supported by the DHHS/Health Resources and Services Administration/Maternal and Child Health Bureau/Genetic Services Branch.

Western States Genetic Services Collaborative
Alaska, California, Guam, Hawaii, Idaho, Nevada, Oregon, and Washington.

Project Directors/Contacts:
Sylvia Au, MS, CGC
Hawaii Department of Health
741 Sunset Avenue
Honolulu, HI 96816
(808)733-9063
sylvia@hawaiigenetics.org

Kerry Silvey, MA, CGC
Public Health Genetics Specialist
Child Development & Rehabilitation Center
Oregon Health & Science University (OHSU)
CDRC-Clinical Services Building
901 East 18th Avenue
Eugene, OR 97403-5254
(541)346-2610
ksilvey@uoregon.edu


Website: http://www.ohsu.edu/outreach/cdrc/oscshn/about/Genetics.html

            PROJECT ABSTRACT  

Project Title:       Western States Genetic Services Collaborative

Applicant Name: Hawaii Department of Health

Project Period:    September 30, 2004 to September 30, 2007

 

Problem:

The most significant barriers to high quality and accessible genetic services in Alaska, Hawaii, Idaho, Nevada, Oregon, and Washington are the unique geography, population distribution, and lack of physician genetic specialists outside large metropolitan areas. The population distribution of each state includes one large metropolitan area, with the remainder of the population being in smaller urban, rural, and remote areas. Thus, one encounters the problems of planning and delivering services to both high and very low-density populations. Alaska, Idaho, Nevada, eastern Oregon, and eastern Washington depend heavily on the cooperation of genetic services providers, policy planners, and genetics laboratories in Portland and Seattle; and Hawaii depends on the cooperation of genetic services providers in California and laboratories in Portland, raising problems of interstate licensing, liability, reimbursement, and travel.

 

Goals and Objectives:

 

Goal A: Plan, pilot, and evaluate a regional practice model that improves access to specialty genetic services, comprehensive primary care, and care coordination for Hawaii, Idaho, and Oregon children with heritable conditions. Services for Alaska and Nevada children may be added in subsequent years.

Objectives: (1) Improve access to specialty metabolic genetic services for children with suspected or confirmed metabolic conditions. (2) Improve access to clinical genetic specialty services for children with suspected or confirmed genetic conditions and congenital malformations. (3) Improve access to comprehensive primary care for children with heritable conditions. (4) Improve access to public health nurse care coordination services for children with heritable conditions.

Goal B: Increase the capacity of Alaska, California, Hawaii, Idaho, Nevada, Oregon, Washington, and Guam genetics and newborn screening programs to perform their assessment, policy development, and assurance functions.

Objectives: (1) Develop strategies to monitor heath outcomes for children with heritable conditions. (2) Promote third party reimbursement of in-person, telephone, and telemedicine genetic services. (3) Assist the State of Alaska to assess medical management and care coordination needs for children diagnosed with heritable conditions. (4) Assist Guam to develop a public health genetics plan. (5) Facilitate collaboration between genetic services providers, families, primary care providers, state genetic programs, newborn screening programs, and others to identify and implement strategies that increase the availability of pediatric subspecialty care for children with heritable conditions living outside urban areas.

Methodology:

The project will be guided by the following philosophies. (1) Support and enhance services available in community. (2) Use and build on resources already available. (3) Collaborate with others working on related activities. (4) Utilize new and emerging communication technologies to enhance achieving goals (and don’t use them when they are not efficient). (5) Develop the minimum regional administrative infrastructure needed to efficiently implement the project. (6) Incorporate the input of families, health care providers, and state and local health agencies and emphasize sustainability throughout all stages of the project. The major clinical components of the practice model are: a telephone consultation service for health care providers, telemedicine visits for children living outside large urban areas; care coordination services by public health nurses; and “on demand” condition-specific written information for health care providers. Activities to improve state genetics and newborn screening programs include: developing genetic services health outcome indicators, collaborating to address interstate licensing, liability, and reimbursement issues; and estimating resources needed to provide comprehensive genetics services for Children and Youth with Special Health Care Needs in the region.

 

Coordination:

Alaska, California, Guam, Hawaii, Idaho, Nevada, Oregon, and Washington State health agencies will collaborate to implement the project. The project will build on the successful collaborations between states and constituencies developed by Northwest Regional Newborn Screening Program, PacNoRGG (the Pacific Northwest Regional Genetics Group), PSRGN (Pacific Southwest Regional Genetics Network), and previous MCHB Region IX and X collaborative activities.

 

Evaluation:

Continuing evaluation and ongoing refinement of activities are key features of the practice model. Parent, health care provider, and state health agency satisfaction; services provided; costs; time spent by clinicians; and services utilization will be monitored throughout the project. Health outcome indicators will be tracked once they are developed. A yearly Regional Genetics Summit is planned to obtain feedback on past activities and gather input for future activities. A comprehensive final evaluation will be completed and submitted for publication.

 

Annotation:

The project staff and collaborators will plan, pilot, and evaluate a regional practice model that improves access to genetic services, comprehensive primary care, and care coordination for Hawaii, Idaho, and Oregon children with heritable conditions. Resources will also be dedicated to increasing the capacity of Alaska, California, Guam, Hawaii, Idaho, Nevada, Oregon, and Washington public health agencies to perform their genetic services-related assessment, policy development; and assurance functions.

 

 
 

 

 

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